Set the Table Anyway

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

Second Dads

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?”).

Thank you, Lord, for the gift of “Second Dads.”

Love to each of you,

C

The Un-Sacred Space of Easter

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 love my 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.

Thank you Lord.

Love to each of you,

C

Hold My Tea…

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.

Love to each and every one of you,

C

Rebecca squeezing in homework while going to a procedure (no, this is NOT the infamous bridge transport, nor the transporter who refused to push the bed!).

Back to our second home…

Well, we are back in the hospital for the week with numerous planned procedures. Today, Rebecca underwent anesthesia to get her central lines placed. Tomorrow she will start the first of 3 plasmapheresis procedures to help abate her over-reactive neurological system. Each plasmapheresis treatment will have a one day break in between. Rebecca will also receive much-needed iron infusions.

This week we will also finally address Rebecca’s fistula. As a post-operative complication, Rebecca developed a tear/hole through her small intestines leading into her bladder. Because her fistula is in a part of the small intestines that is temporarily cut-off from her digestive system, we have time to make a strong surgical plan. Rebecca will have 2 different CT scans and numerous urology and colorectal surgery consults this week. Please pray for wisdom for all teams involved.

Rebecca was already informed by one consult that she will need another potentially significant portion of her intestines removed to fix this problem. I can tell right now you we almost passed out at the news.

No exaggeration.

I was seeing stars and desperately trying my best not to hit the floor while this doctor was talking. Rebecca straight up told the doctor she had no more intestines left to loose so surely they could find a different solution. We are obviously FERVENTLY praying this specialist is wrong. I mean, I would like my child not to be in the Guinness book of World Records for the shortest surviving intestinal track. We are fairly certain Rebecca already qualifies for survival with the most missing organs….obviously not a record anyone aspires to win.

We know the fistula is a serious problem but we are praying for the least invasive future surgery as possible (and by future we hope months away, not days). We humbly ask for prayers from you as well.

Love to each of you,
C

This is a picture of the kids celebrating my birthday night outside. Our first time to eat out together as a family in well over a year! Brian is taking the picture of course!

Success!

Quick update from Brian – more tomorrow:

Got out of procedure late – very successful! No one in the world that we or Patel know of has ever done this procedure using this technique before. Absolutely brilliant and the least intrusive as possible on Rebecca. Stent safely placed as well. Thankful for your prayers.

Surgery Day Number 500,304….

Surgery today. Please pray the multiple doctor teams can break through Rebecca’s scar tissue without causing further damage to her intestines. This is the first time the surgeons have attempted this particular procedure and have spent the last week crafting a very specific and unique plan.

Thank you for loving us so well – we love you right back,
C

Focusing on laughter….

Sometimes things don’t go the way we anticipate. Wednesday was one of those days.

To be honest, I delayed updating Rebecca’s status because my mind refused to fully process another problem.

What “should” have been a short, fairly simple procedure dilating Rebecca’s anastomosis site, ended up a full-day event in the OR. In the span of a mere 3 weeks, Rebecca’s open surgical connection completely scarred down. Dr. Patel spent HOURS trying everything he could, even going in through Rebecca’s stoma site to break through the scar tissue. Finally, at the risk of puncturing through Rebecca’s small intestines, Patel was forced to end the procedure.

Obviously, we are all greatly disappointed at this unexpected complication – especially Dr. Patel. We also discovered during the procedure that Rebecca DOES have a post-surgery fistula (a hole between her small intestines that leads into her bladder).

Because of these serious complications, Rebecca’s surgical team is regrouping to form another plan.

Although these are critical problems, the fistula/blockage are in the portion of Rebecca’s intestines that are cut off from food so we have time to come up with a strong plan as opposed to rushing into a last-minute major surgery.

This week is Spring Break and most of Rebecca’s doctors are out of town so we are preparing for a procedure the week of March 15 which will include 3 surgical teams working on Rebecca at the same time.

In the meantime, the Taylor family is concentrating on spending family time out of the hospital while the boys are off school. We plan to laugh often and live fully – our unexpected miracle. We will deal with all of our medical complications soon enough.

Thank you for your love and prayers.
Love to each of you,
C

The sweet boys gave Rebecca flowers coming home from the hospital.

The Frozen Week

Sorry for the delay in updates – we are busy managing life outside of the hospital and the physical, emotional and mental challenges that come with this move.

Tomorrow, Wednesday, we will check back into the hospital for what should be a short procedure to stretch out Rebecca’s surgical anastomosis. Rebecca still has blood backing up in her intestines so it is necessary to dilate her strictured surgical site for relief at intestinal pressure. If all goes well, we hope to go home for another reprieve before returning to the hospital for a longer stay on March 15 to finish treatments we delayed by coming home early.

Prayers for Rebecca’s procedure are greatly appreciated.

One of the first questions people ask me is how our house fared in the snow storms when we first returned home. We were without power for 1 day and without water for 5. No, we were not prepared – our focus was solely on Rebecca’s hospital discharge.

The boys continually shoveled snow into our bathtubs all week while we then heated the snow up in buckets by the fire. We lit stoves with matches, got creative with meals in a pantry I haven’t purchased food in for 7 months. We walked around with candles while bundled with blankets (which is a good thing we were covered in layers because we could not take showers for 6 days!). Pharmacy could not deliver imperative meds all week which sent me scavenging through our home supplies, piecing medications together and praying the combinations worked. Food was interesting, heat was sub-par, water was non-existent and medical management was a tad dangerous, but I cherished EVERY moment. My soul was content to be home in any state – who cares that we could not flush a toilet.

School and work were impossible so our days were spent huddled by the fire together. And my heart sang with praise as I watched the kids together in the same room while simultaneously staring at the beauty God blanketed around us. And oh, what beauty.

It was hard for me to hear the onslaught of complaints coming from people across the state who survived. I wanted to say:

“Hold on, when this freeze is over you will go back to your normal lives with a hope-chest full of memories.”

Because, if you survived, you have hope. Your house may be in shambles but there is always a promise to rebuild. If we are alive, there is always hope to rebuild – a broken home, a broken relationship, a broken body, a broken spirit….

I will take home with my family in the middle of a blizzard without power and water any day of the year as long as we are together.

Thank you Lord for the unexpected miracle of a freeze.

Love to each of you,

C

Home!!!

We are home!!! Hallelujah WE ARE HOME!!!

Brian came to rescue us from the hospital in the middle of the storm last week after my friend Dr. Dina Tom moved heaven and earth to make sure Rebecca could get home as safely as possible (especially considering it was earlier than projected).

Dina was in her residency program just as Rebecca entered the hospital almost 11 years ago and has worked diligently and fervently on Rebecca’s care ever since. This woman has seen us through our worst and best moments – all the way from doing rounds with me in a hospital towel because there was no time to get changed in Rebecca’s critical condition, to celebrating in formals at Rebecca’s Wish Gala. Dina has lived through our highs and lows right alongside us.

Dr. Tom is compassionate, kind, intelligent and never stops pursuing what is right for her patients. But most importantly, Dina is all-heart. We love our Dr. Tom and were blessed the day she entered our lives.

Below is a picture of a victorious Dr. Tom after preforming an unexpected miracle by driving to the hospital on icy roads just to pull Rebecca’s central line and get Rebecca the medications she needed after insurance/pharmacy messed up the orders appropriately 501 times….

Thank you Lord for the Dina Tom’s of the world.

Love to each of you,
C