Greetings to all those who love and pray for Rebecca…..
Just got the update from Christyn! Rebecca is out of surgery. She was transferred straight to ICU. She will be recovered in ICU. Considering this was another huge surgery, Christyn reports the surgery went “wonderfully well”.
As you know, there were several goals in this latest surgery:
1) The medical team was able to separate her intestines from her bladder so that the fistula area is now clear…HALLELUJAH!!!
2) Rebecca had a tremendous amount of scar tissue that had hooked around multiple sections of her intestines which was causing the full and partial blockages. The doctor described her intestines “like a roller coaster with extreme ups and downs”. The scar tissue was removed and an amniotic solution was used to coat the intestines to hopefully help prevent future scarring. The team was very concerned how quickly Rebecca had scarred down after only 4 months from her last major surgery. Brian and Christyn are asking for PRAYERS THAT THIS AMNIOTIC SOLUTION WILL HELP PREVENT FUTURE ADHESIONS.
3) The stoma (ileostomy) that Rebecca has had for several months was reattached and closed. HALLELUJAH!!!
4) Rebecca is on a sedation IV drip for the next few days to help her tolerate the postop pain. Christyn reports Rebecca wakes up for brief moments screaming and then goes back to sleep.
So, this is a road sadly well traveled for Rebecca and Christyn (and the males in the family). The next few days will be about pain management, prevention of infection, and trouble-shooting the moment by moment changes that can occur after big surgeries (for anyone, but especially Rebecca).
“So dear Father…we come to You again as a body of believers. You are the Healer. You are the Comforter. You are Sovereign God. You are the Source of all good things. We ask that You bring Goodness to Rebecca and shower her with what ONLY You can give….Healing…Comfort….Goodness…after all, Father, that is Who You are…we ask You to reign over her and in her with Your Presence…all of these things…bring them to Rebecca. We ask for Your Protection against scarring in her intestines….for Your Protection against infection….and for Your Protection against any other adverse potential problem…..bring the Shield of Your Faithfulness to cover Rebecca….hear our individual prayers dear Father…we love You and thank You for what You have done, are doing and will do for Rebecca.”
In the Mighty Name of Jesus we offer our prayers to You….
Despite our conglomerate pleas across the nation – we need surgery.
I have waited to write these words because our family has grieved them with many tears. After begging the hospital team to release us on a trial basis – we are home for the week while her 3 surgeons make plans to open Rebecca’s abdomen back up on Tuesday. We are cramming everything possible into this week – AP tests, senior pictures (thank you Dina Selva!), a church senior banquet on Friday and a Symphony Belle presentation on Saturday. Then, we will head back to the hospital for another major surgery to fix her hernia and/or scar tissue of the small intestines, re-work her stoma and heal her fistula. More ICU time, more sedation drips, more increased pain factor from a sliced-through abdomen, more isolation from the family, more – well more of all hospital madness.
This surgery is hard for me to accept because Rebecca looks so GOOD! She is not doubled over in pain unless she eats. So, she can’t eat. And even liquids create tremendous pain when passing through the damaged portion of her intestines. So, she barely drinks. Unfortunately, TPN feeding is not an option because her liver is still inflamed. Therefore, Rebecca has lost 10 pounds in 2 weeks. This cycle will continue until we operate on her intestines, so waiting until after graduation is not an option. The surgery must commence.
I look at Rebecca laughing and smiling and keep telling myself:
“Surely we can wait??? Surely, we don’t have to make this happy, joyful child go back to a comatose state with her abdomen wide open? Surely, we can delay until after her friend’s COVID-friendly prom and after her Top 10 graduate banquet and after all the other graduation events Rebecca excitedly planned all year from the hospital bed? Surely Lord, this surgery does not have to be now…”
But surely it does. And I am not ready for this – none of us are.
We are sad. All of us. Painfully sad.
But we will celebrate this week with full-power. And laugh and cry and love and build senior memories together. And those memories will be our unexpected miracle.
I apologize for the delayed update. Yesterday was consumed with the typical chaotic operating-room drama filled with anesthesia consults, pre-op and post-ops. Here is our current status:
Great news –
As you know – Rebecca has multiple, serious post-surgical complications we are concurrently working on. Her top three right now are:
– Intestinal/bladder fistula
– Scarred down rectal anastomosis site
– Intestinal blockage in the upper portion of the small intestines
While we are awaiting results from 2 MRIs on Rebecca’s blockage, Rebecca’s doctors wanted to capitalize on her NPO status and replace her current stent (from her March procedure) in her anastomosis site. The doctors planned to slowly increase Rebecca’s stricture (where her small intestines and rectum were joined last January) by replacing progressively larger stents every few weeks over the next few months. When the doctors went in to replace Rebecca’s existing stent yesterday, her current stent had already fallen out of place and her anastomosis site was completely open. In fact, it was so wide open, the space is now considered a normal size and there was no need to place another stent. Her stricture is considered officially healed! What we thought would be up to 6 plus surgical procedures to fix, we finished in only 3.
Our unexpected miracle – Hallelujah!!!
Thank you Lord.
Not-So-Great News –
We are still struggling with Rebecca’s blockage and nutrition is VERY difficult to sustain. We are loading Rebecca with all the IV fluids, electrolytes, potassium and magnesium we can give her but drinking liquids still creates intense waves of pain and backs-up in her intestines. TPN nutrition is currently not an option due to the state of her liver. We should receive the results of her 2 MRIs later today but in truth, MRIs are notoriously bad for giving specific details of the intestines. We are most likely dealing with one of three problems: herniated intestines, scarring from her abdominal cavity wrapped to the intestines, or a paralytic ileus that is taking extra time to heal. In the meantime, we are hitting multiple approaches – prokinetic drugs that will not affect her liver, contrast drinks known to promote movement, and even purposely throwing Rebecca’s body into narcotic withdrawals to stimulate her intestines. Anyone want to live in a hospital room with a teenager going through serious drug withdrawals??? It is SUPER fun I (almost) promise….
Regardless of her current situation – we still have hope and are fervently praying for healing without surgery.
To distract ourselves, we are focusing on how we want to celebrate Rebecca’s last few weeks of her senior year. We have big plans. She has missed almost half of her junior year and her entire senior year. The emotional isolation of living in a hospital during COVID has taken its toll and we want to remedy that by making beautiful memories with her friends at the very end of her monumental year.
I am constantly pacing our hospital room praying:
“Lord, please heal Rebecca without surgery. Please Lord. Please let her enjoy a few weeks of her senior year with her friends. Please Lord give her a small break to heal her body, heal her emotions, heal her spirit. Let our family have time together, Lord. Please.”
I pray the Lord will honor my pleas, but even if He doesn’t, I know He is here – carrying us through this difficult journey….
Love to each of you,
One of our pre-COVID, pre-procedure pictures (therefore no masks!). I sure do love this warrior girl of mine.
Rebecca has been hospitalized the last few days due to another intestinal ileus/blockage. The surgeons are trying medical treatments to relieve the blockage in an attempt to avoid surgery. We had some promising signs yesterday but as of today, Rebecca still cannot take a sip of fluid by mouth. We could also use big prayers about Rebecca’s liver. Her enzymes are severely elevated, and the doctors and I are struggling to understand the root cause? Rebecca’s liver always takes a hit during major surgeries, but it eventually settles. We are going on 8 months of liver inflammation though and it seems to be getting worse the last few months. We will continue working with her specialist and hope for a treatable answer soon.
Rebecca has asked me to write to our followers for a very specific, non-medical prayer. On May 1st, Rebecca has to make her college choice. As all of you know, Rebecca was accepted to Harvard University. Once she got into her first choice of college during early acceptance, she did not even bother to apply to Yale and Columbia (her other options). Assuming God allowed Rebecca to attend college – Rebecca was Harvard all the way.
And then, Rebecca received a phone call from the hospital. Rebecca was offered an elite scholarship that chooses only 15 high school graduates in the world. She was admitted to a program that paired a Master in Engineering with a Medical Degree. Because Rebecca has always wanted her PhD in medicine, they offered to allow her to add this degree onto the program in an extra fifth year. And if Rebecca chose this particular research-based program, the top world specialists in research would mentor and allow Rebecca to start her pancreas inventions and research as a Freshman in college. She would have full-access to labs, all laboratory equipment, grant-money for student research, and the ability to test her ideas with scientists. They want Rebecca’s mind, her creative ideas and her tremendous experience in the medical field. And they want to fund everything from her undergraduate in engineering, her Master in Engineering, her Medical Degree, to her PhD in medicine. EVERYTHING. This scholarship is through the Texas A&M system.
So, here is Rebecca’s choice:
Harvard undergraduate (there are no merit-based scholarships at Harvard for National Merit Scholars or scholarships of any kind at Harvard). After her Harvard undergraduate, Rebecca would apply to an MD/PhD program from scratch (all students who are accepted into a form of the MD/PhD program have the program completely covered, thus making the program competitive to get into, but the tuition would be free). She could technically apply to EnMed after attending Harvard for her undergrad degree, but acceptance again into this program is not guaranteed and she would lose her scholarship since EnMed is not considered a joint MD/PhD program.
Texas A&M undergraduate followed by the EnMed program (Master’s and MD combination) and PhD in medicine (all 100% fully funded including room and board through the Brown Scholar Program).
Harvard pros: a small student body (a little over 1,500 students per grade), low ratio of faculty to students (7:1), nearly all students living on campus for all four years, access to some (but not all) of the Harvard labs and equipment, the ability to apply for student-research grants through the Harvard system, and low average class size (about 12 students per each class so the professors have one-on-one time with the students). And again, Harvard is the school that Rebecca has dreamed about and worked for since she was in fifth grade.
Harvard cons: location across the country, extremely costly with no merit-based scholarships, no automatic acceptance into a med school, limited research opportunities, AP credits are not counted (outside of 3-4 class exemptions), and Rebecca would potentially be giving up the EnMed program.
Texas A&M pros: full coverage of all education, connections to many people in the city (including Rebecca’s grandparents), various research opportunities with ease of access, all AP credits will be accepted so Rebecca could either graduate in a year and a half (not her ideal option) or earn a second Master’s in her time at A&M (her preferred option), a guaranteed spot in the EnMed program, and all EnMed benefits.
Texas A&M cons: much larger student body (with 60,000+ students), less individual time with professors, learning is less hands-on and more lecture style (Rebecca learns best from debate and practice), and Rebecca would have to stay in the same school system for nearly a decade (less diversity of education).
Harvard vs. A&M – that is the question.
It is unexpectedly miraculous, after everything Rebecca has been through, that she has some of the most coveted school choices in the world. Rebecca cannot go wrong with either option. And it is nice for once, to be making a major non-medical decision. We have made almost every decision the last 11 years based upon Rebecca’s health but this time, she wants to decide what is best for her mind and future – not her broken body. Yes, I get the irony of this statement as I post this from a hospital room.
Prayers are greatly appreciated in this life-altering choice. Although Harvard has always been Rebeca’s dream – A&M EnMed program may be Rebecca’s new dream? In Rebecca’s perfect world she would go to Harvard for her undergraduate degree and the A&M EnMed program afterward – but that combination is not possible with the scholarship program offered.
Brian and I have left the decision firmly in Rebecca and God’s hands. Please pray with us for His clear guidance.
Thank you, Lord, for gifting Rebecca with these incredible school choices.
As many of you know, after missing every holiday gathering with my family this past year we excitedly planned to celebrate Easter at my parent’s home. Instead, we went to the hospital – again. My mother wrote the most beautiful poem which perfectly expresses our sadness and hope combined:
Set The Table Anyway
I knew I was taking a chance setting the table for Easter two weeks early. But I love to live on the edge! I carefully lifted Gran’s yellow “Rosebud” dishes from the upper shelf. This is an English bone china made by the Grimslade Brothers in 1934, each piece marked and signed, a silent story of its own.
I spent half a day washing and drying the dishes and setting the dining room table with ten place settings. From the buffet, I retrieved the embossed linen napkins that I inherited from Aunt Grace and slipped them into the napkin rings. The silverware was our wedding gift 48 years ago. I loved the entire process ~ especially dreaming that you could be here eating garlic roasted chicken, asparagus, mashed potatoes, hot rolls and lemon cheesecake, filling our antique yellow and green glasses with mint iced tea and our small rosebud cups with hot coffee, cream and sugar.
I imagined the new stories floating around the table and all the laughter that would ensue and then all the groans when Papa started repeating his old family stories over and over. “It’s our inheritance!” he defends himself. Of course he is right. This table, these people hold memories and stories that must be shared to be remembered.
I smiled as I finished the last place setting and stood back to admire the beautiful table. There was a joy deep within me. As it happened, you could not come for Easter. But I still have the table set and I will continue keeping fresh flowers in the three vases.
And each morning I purposefully walk through the dining room and hope and dream. Because one day ~ you are going to eat at my table again. And there will be laughter and there will be groans and all will be good.
“One day everything sad is going to come untrue.” ~ Sam Gamgee, Lord of the Rings
~ Rebecca Crawford Russell Still waiting for Easter April 11, 2021
Anyone who knows Rebecca, knows of her special relationship with Dr. Patel. Rebecca lets everyone know Brian is her “First Dad” and Dr. Patel is her “Second Dad.” When Rebecca got accepted to Harvard, she FaceTimed Dr. Patel to tell him the good news and he immediately said, “I am a very proud Harvard Second Dad.”
In some circles the term “Second Dad” might look a little different – but we have spent almost as much time living in the hospital as we have at home the past 11 years. Our doctors and nurses become family, but Dr. Patel has always held an extra special place in Rebecca’s heart.
From the beginning, despite their differences, Rebecca adored Dr. Patel. She bonded with this soft-spoken man in a way she never had with any other doctor. She was fascinated by his profession and was very inquisitive to his field of medicine.
Within a few weeks, at the age of eight, Rebecca made the decision she was going to be Dr. Patel when she grew up.
I realized how serious her intentions were when Halloween rolled around. Every year I dressed the children by theme. One year it was cowboys, one year farm animals, and one year medieval royalty—in 2010 they were to be pirates. Their costumes were fantastic and I was looking forward to another great year of pictures. Rebecca, thoroughly enjoying my past themes, changed her mind at the last minute. She was adamant about choosing her own costume—this year she was going as Dr. Patel. The thought was so absurd I laughed out loud. My eight-year- old, fair-skinned, green-eyed little girl wanted to dress up as a middle-aged Indian man.
How in the world was this going to look?
Yet no amount of pleading and redirecting would change Rebecca’s mind—she was going to be a pediatric pancreas physician like Dr. Patel when she grew up, and she was going to start now. Realizing I already lost the battle, I finally gave in.
It was one of the best parenting decisions I ever made. Rebecca glowed that Halloween. She loved being a doctor, and it thrilled her to dress as her future profession. November 1, 2010, was Rebecca’s third ERCP procedure with Dr. Patel. That morning after Halloween, sitting in the surgical waiting room, Rebecca excitedly showed pictures of herself—dressed as her hero.
I remember the look on his face like it was yesterday.
Dr. Patel stared at the picture in disbelief and tears sprang to the corner of his eyes. After trying to regain his composure he declared that all the awards he received in his career to that point paled in comparison to this moment. I was never more thankful my child got her way.
Rebecca continually stated one of the best parts of her being hospitalized was getting to see Dr. Patel. She excitedly anticipated his visits where she showed him her new inventions in her journal and they discussed what life would be like for her one day in medical school. Dr. Patel made Rebecca his honorary “fellow” and she would spend a day every summer shadowing him and learning her future trade. She surprised him with a Gastroenterology award at a ceremony in which she was asked to be the presenter reading her “Top Ten Things I Love about Dr. Patel.”
And during the hospital Christmas party of 2012, Dr. Patel presented Rebecca with the best gift she had ever received—a Pancreas Center lab coat with Dr. Rebecca Taylor embroidered on the front. Despite her compromised state that day, Rebecca beamed as she proudly wore this badge of honor. She felt a part of the team that was fervently working to save her pancreas. She was official.
Dr. Patel has walked every step of this medical journey – the highest of highs and the lowest of lows, right beside us. He never falters or waivers in his steadfast commitment to Rebecca, even when Rebecca’s complications are out of his specialty.
Outside of God, Dr. Patel was the closest in human form to heal Rebecca. He had ample opportunity to become prideful of his position, yet the more powerful he became in the lead role of Rebecca’s care, the more humility he portrayed. Dr. Patel is, without question, our unexpected miracle from the Lord.
So, it is only natural at the age of eighteen, Rebecca refers to Dr. Patel as her “Second Dad.” And it is only natural that Brian would buy Dr. Patel a t-shirt for Rebecca to present to him that said, “Harvard Dad” (for some reason, there were no t-shirts that said, “Harvard Second Dad?”).
Sometimes, I am too overwhelmed with the magnitude of our situation to post an update. Sometimes, I am in denial. Sometimes, I don’t tell my friends we are back in the hospital to give them a break from serving us over and over and over. Sometimes I am too sad to place my feelings into words.
This week was one of those ‘sometimes’. And I know every caregiver of a chronically ill person can understand my ‘sometimes’.
We left the hospital last week in rough shape with a beat-up body from the plasmapheresis toll and a urinary tract infection (UTI) from Rebecca’s fistula. But with an arsenal of antibiotics, we felt Rebecca could recover best from home.
Only Rebecca did not recover, she got worse. Much worse.
The UTI turned into a full-blown kidney infection and Rebecca’s susceptible liver turned a bad corner. We spent days trying everything we could keeping Rebecca home – different oral antibiotic combinations, intramuscular shots of antibiotics, but nothing worked. So, we headed back to the hospital – this time for Easter.
Easter has always been a sacred holiday for the Taylor family outside of the obvious reason.
Alexander and Nicholas were baptized on Easter – dedicating their life to a Savior who sacrificed for them before they were ever born.
And Easter has been the ONLY holiday (major and minor) Rebecca has not spent in the hospital. The past 11 years, Rebecca has experienced every holiday in the hospital multiple times, yet never once Easter. She might be released the week beforehand or admitted the day after, but somehow in a divinely-fashioned way, Rebecca never entered the hospital on Easter Day.
We always thought there was something magical about this bizarrely beautiful fact. Jesus’ resurrection somehow equated our physical, emotional and most importantly, spiritual rest. Even if that rest was shortly lived, we felt protected in the sanctity of this brief Sabbath – our unexpected miracle year after year after year.
Easter was our sacred space. And we counted on that sacredness.
When we realized a hospitalization on Easter was inevitable – Rebecca cried and cried. She begged to stay home – surely some medication could work and this miraculous tradition between her and God would remain intact. And yet, despite Rebecca’s pleas – her body worsened, and fevers abounded.
So, the Taylors spent Easter in a hospital filled with pokes and prods and needles and lack of sleep while hooked up to IV antibiotics. And the magic of Easter was no longer magical.
Another line in the sand crossed….
Another one-way deal with God shattered….
What do we do when our sacred-space is invaded? How do we react when our holy moments are tainted? I have no words pretending to know why God allows certain things to happen. Especially things my human eyes view as good, pure, special and noble. God’s ways are not my ways. But I do know if the Lord wanted Rebecca home for Easter this year, He is all-powerful enough to make it happen. My God does not make mistakes.
God did not forget this was our ‘sacred’ holiday.
God did not forget our family desperately wanted to be together.
And God most certainly did not forget to heal my Rebecca.
“For My thoughts are not your thoughts,
Neither are your ways My ways,
declares the Lord.
For as the heavens are higher than the earth,
so are My ways higher than your ways
and My thoughts than your thoughts.”
Isaiah 55 8-9
The great I AM has a purpose even in the midst of our pain, hurt and confusion. I may not understand, but I don’t have to understand to trust my Creator’s heavenly ways are far greater than my limited earthly view. I don’t have to understand to love God.
And I lovemy God. Whether we are in the hospital, or home; whether it is Easter, or a regular day of the week – my love for the Lord is not based upon my location.
I just love Him.
And that love supersedes my desire for understanding – even in the hardest of circumstances.
So far, Rebecca has officially finished 2 of her 3 plasmapheresis treatments and 4 iron infusions. I wish I could report smooth sailing, but my girl is STRUGGLING.
Fevers, flu-like body aches, and intense intestinal cramping – the pain is especially pronounced around her newly placed stent at the anastomosis site. We almost postponed today’s plasmapheresis procedure but Rebecca was determined to push through despite her symptoms. If she does not turn a corner fast though, we may be forced to cancel her 3rd plasmapheresis procedure. Prayers are greatly appreciated for the side-effects to lesson dramatically.
During COVID times, transport in a hospital is slow. And by slow, I mean what should be a transport turnaround of 10 minutes can be up to 2 hours. I was not exaggerating when I said, slow.
Transport was called for Rebecca’s plasmapheresis treatment to the infusion room. After waiting over an hour and a half (thereby making us over an hour late for our timed-infusion) we headed out of our room with Rebecca’s hospital bed and IV attachments.
I was fully prepared for our infusion with my over-sized book bag crammed with far too many books to read in a month, much less a few hours, and each of my hands holding a hot English Breakfast tea for Rebecca and I. Our journey was going well until we reached the dreaded ‘death-bridge’. This aptly named ‘death-bridge’ is a bridge connecting 2 towers together with an incline all the way up. Pushing a large hospital bed with a patient is a chore. We made this trek a few times before, but this time our transporter came to a complete-stop while the following conversation ensued:
Transporter – “No one told me I was going up a bridge. I am not about to push this bed up there. I am calling for back-up”.
Me – “Back-up?? Like, police back-up or transport back-up? Because if it is police back-up you have a far greater chance getting them here sooner….”
Transporter (rolling her eyes dramatically at my comment) – “I am calling for transport. I will not go up that bridge – there is no way.”
Me – “Ma’am, we are already over an hour late for my daughter’s infusion. If we wait for another transporter, we will miss the infusion altogether and this appointment is critical for my daughter. All we have to do is make it over this bridge.”
Transporter –“I can’t. I just can’t do it.”
What happened next is referred to in Texas as a ‘hold my beer moment’. Except I was holding tea. And I don’t drink beer. So actually, it is not at all like a ‘hold my beer moment’ but rather a ‘hold my tea moment’….
I asked Rebecca to hold her hot tea, balanced the other tea with one hand and started pushing Rebecca’s heavy bed with my now free-hand up the entire inclined bridge. And yes, of course I was in heels.
The transporter had no words – she just stared at me like I was some freak of nature. Which, maybe I am, but I was not about to miss Rebecca’s plasmapheresis treatment.
About half-way up the bridge, a nurse who weighed maybe 80 pounds soaking wet, saw my predicament and helped me push the bed the rest of the way up. The nurse and my weight combined did not equal the muscular transporter and yet – our determination to do the right thing made it happen. And when we got to the top of the bridge, we all loudly cheered – especially impressed I only spilled two drops of tea the entire way up!
Well, we all cheered except the transporter. She moped sullenly, dejectedly stating over and over there was no way she could have pushed the bed up that bridge.
There are times in life when we are scared. Scared to go up an unexpected incline. Scared to move forward after a bad experience. Scared to try something new. Scared to not have the strength to perform the task in front of you.
These past 11 years of medical madness I have told myself no-less than a thousand times, I cannot endure another moment watching Rebecca suffer.
Lord, please….not another surgery, not another hemorrhage, not another transfusion, not another infection, not another organ removed, not another pain spell….Lord help me, I just can’t do this anymore.
And yet, as a fresh prayer forms on my lips, energy is renewed in my soul. I awake each morning, place one foot in front of the other and make the necessary (albeit ridiculously hard decisions) that help my child’s survival. And somehow, in an unexpectedly miraculous way, the days I once deemed unbearable, God finds a way to supply me with the strength to get through another “not another.’’
Our transporter never got that memo. She reached the top of our bridge still convinced she was not good enough to try.
Through God we can endure the unendurable. Through God we can move forward. Through God we can accomplish the supernatural. Because we all know pushing a heavy hospital bed one handed up an inclined bridge while balancing hot tea in high-heeled shoes is most assuredly supernatural. But it also helps to have a companion to hold your other tea….
Thank you Lord.
“Do not be conformed to this world, but be transformed by the renewal of your mind, that by testing you may discern what is the will of God, what is good and acceptable and perfect,” Romans 12:2.