On the Battlefield

The last few days were brutal. And yet I have said that phrase over and over and over the last 10 years…… Hemorrhages, transfusions, infections, pneumonia, pulmonary edema, de-saturation, and pain, oh the pain.

How Lord, how, could I possibly survive another day? How much more do you want me, want my child, to take? How can I find a sliver of an unexpected miracle in this?

I flood heaven’s gates with these questions while pouring my grievances out to the Lord. The analogy of a soldier running through my mind….

I go to battle every day.

Each morning I put on my uniform, apply my war paint, and step into a minefield of unknowns. Every unexpected explosion brings its own fresh version of hell.

Today was a gruesome reminder as I stared into the bloody crater now existing in 32 staples running across the length of my child’s abdomen. I have witnessed events I would give anything to “unsee.” Multiple hemorrhages from different sites of my child’s malnourished body. Feverish deliriums. Screams of agony, hour after hour.

Death looming around every corner…

I never understood how men in war could experience the horrors they did and survive emotionally. After watching and enduring Rebecca’s torture, I realize there is an acceptance to the battle you are facing as well as a certain numbness. You have no other choice but to face the abomination in front of you and pray you make it through alive.

I am certainly not alone in these trenches, there are plenty of others fighting beside me—trying to rationalize what possible meaning could exist behind this … war?

Recently, I read the phrase, “There are no atheists in foxholes.” Contrary to that belief though, I have found numerous atheists in hospitals. Most of which consist of parents crying out to a God who seems deaf to their pleas—mute to their hearts.

My hospital neighbor from Africa has a baby with brain cancer and now failing kidneys thanks to a medicinal side effect. This mother worked hard to pay off her mortgage before having children. She will now lose her home as a result of the expense of her child’s chronic illness.

My PICU neighbors had a teenager born with severe autism. Although unable to speak, her family recognized pain in her expression. Turned out, their child had pancreatic cancer. After a horrific recovery, the parents were told a mistake was made—the pathologist was not given the results during surgery and her cancer was not fully removed. Another procedure would be necessary after her body properly heals while her aggressive cancer continues to flourish.

A friend we made at the Ronald McDonald House lost a biological child to leukemia. They adopted another child only to learn of that child’s diagnosis of the very same disease their biological child just died from.

5 patients coded last night from COVID in less than 3 hours – without their family comforting them in their last moments.

Blow upon unthinkable blow.

There are no words for the sorrow I feel walking these halls; it presses upon me to the point of breathlessness.

How do I believe in a Creator who oversees such bloodletting, such cruel and incomprehensible carnage?

Is my God excessively cruel, or do I believe there is a purpose in this version of cruelty I am enduring?

This is every warrior’s thought and yet every warrior still has a choice. Do we follow our Commander into the fray—the hailstorm of gunfire? Even if it makes no sense from the view of a field wrought with slaughter?

But maybe that is the key to blind-faith—the realization that my vantage point is limited, incomplete.

I am not the general—I am merely a private. I can only see what is directly in front of me while my general, my omnipotent, all-knowing God sees every field of every battle at all times.

And, even better, this same God knows that it is He who will win this war.

When David was going to battle against the Philistines, David inquired of the Lord what to do, and He responded, “As soon as you hear the sound of marching in the tops of the poplar trees, move quickly, because that will mean the Lord has gone out in front of you to strike the Philistine army” (2 Samuel 5:24).

Yes, I am going into battle with Rebecca’s body, but I am not entering this battlefield alone.

My Lord has gone before me, and is preparing a miraculous way for me to win this unexpected war.

            Thank you for your continual prayers on behalf of our war-weary family.

We are forever grateful,

C

Post op – day 3

Unexpected Miracle = Rebecca’s bleeding is down almost 90%!!!

We tried a combination of IV bags of albumin followed immediately with units of blood transfusions. This combination helped clot R’s bleeding vessels (of course – ultimately it was God).

Our most serious issue right now is another post-surgical infection brewing – fevers, high white blood cell counts and CRP levels. Please pray we can stop this infection before it gets worse. Rebecca is very fearful and slightly panicking about another infection so soon and her body feels miserable all-over. We were already on the IV antibiotic meropenum (which was the antibiotic that fought her last bacteria) to try and pre-empt another infection. Infectious Disease is considering adding another IV antibiotic as well.

Love each of you,
C

Post-op Day 2

Hello to all those who have been loving, thinking and praying for Rebecca today….

Christyn just sent an update. She reports that they were “waiting all day to come up with a plan”. Rebecca was on the OR schedule this morning, but Christyn stepped up and put a stop to it ( or a delay ). The bleeding had improved that was coming from her bowels, but not from her ileostomy site. Since there was some improvement, Christyn made a difficult decision to say “let’s wait”. At noon, the surgeon, transplant team and Christyn gathered to discuss Rebecca’s situation again. Rebecca was scheduled for late afternoon in the OR. This time, the whole team made an “executive decision” to hold off on a potential surgery another day. The hope is that Rebecca’s body will naturally form a clot and stop the bleeding. In the meantime, they continue to infuse her with albumin, blood, and plasma to keep Rebecca stable.

The whole team (especially Christyn and Brian) are “terrified” to take Rebecca back to surgery this soon. The doctors “feel that every day of healing helps”. However, there are certain risks in continuing to transfuse her with blood products. The decision was made that waiting another day is by far the “lesser evil”.

The biggest prayer request is that Rebecca’s body will naturally clot off the area that has been bleeding. And so friends of Rebecca, this is the news for now. No doubt, the day has been LONG AND TEDIOUS.

“Dear Father…we THANK You that there has been some improvement in the bleeding. We pray in the Name of Jesus that You would stop the bleeding by Your Power. We ask for a miracle tonight…even now. We also pray for Christyn and Brian as they make these very difficult decisions that sometime go against medical opinion or advice. We pray for Your Wisdom to shower down upon Christyn and Brian (and the medical team) as they are confronted with these complicated situations (sometimes unprecedented situations!). We again turn to You, the ONLY Hope in this world and ask that You bring Hope and Healing to Rebecca and her family.”

In the Mighty Name of Jesus we offer our prayers….

-Carol Nelson

Prayers for Severe Bleeding

To all those who love and pray for Rebecca….
Rebecca had a very difficult night and has had a very difficult day. Christyn reports that the biggest concern is that Rebecca is bleeding postoperatively. It is coming from the bowel area and ileostomy. Probably a vessel was punctured as they were stapling at the anastomosis line and has not clotted off as of yet. So, something (probably a vessel) continues to bleed. Rebecca has received units of blood and plasma throughout the night and during the day. Her blood pressure is low and they are trying to keep pace with the blood loss and stabilize her. If the bleeding does not stop, the plan is to RETURN to the operating room tomorrow AM, unless it is necessary to return sooner. The medical team is trying to give Rebecca at least 24 hrs between procedures to let her settle from the hugeness of everything. The night/day have been scary and unsettling for Christyn/Brian. Speaking of Brian, according to Christyn, he was able to “fight his way into the hospital and ICU late last night…and he has been a huge comfort for Christyn and Rebecca”….YOU ROCK BRIAN!!!! WAY TO GET TO THE TWO WOMEN IN YOUR LIFE!!!!!!

Anesthesia attempted 4 times to place an epidural without success. Rebecca is on the sedation IV drips, but unfortunately is awakening fairly often in a tremendous amount of pain. The whole situation is fairly complicated and rough…not smooth in these first postop hours as we all had hoped and prayed for.

Christyn’s parents have come into San Antonio to stay with the boys so that they are not alone. Becky and Don, you two BOTH ROCK as well. Yea for you coming to SA…

So friends, this is the news for now…

“Dear Father….we do not understand this…really, how much can one little girl take and endure AND how much can her family take and endure? It seems WAY TOO MUCH! How much suffering can a family have? There seem to be no answers…at least in our human eyes, we DO NOT SEE. To speak Truth over terrible events does not make the events less painful or less sorrowful…but, we will speak Truths that we KNOW ARE TRUE….and they are ALL ABOUT YOU. Nothing else in the world is certain…nothing else in the world is sure…nothing else in the world can be trusted….ONLY YOU CAN BE TRUSTED….so we come to You AGAIN in prayer because YOU ARE THE ONLY TRUE SURE SOLID ANCHOR in this life. No matter what circumstances bring, YOU DO NOT CHANGE. You are the Same God Who parted the Red Sea…You are the Same God Who oversaw Job’s life in his loss and SHOWERED HIM WITH MULTIPLE BLESSINGS…You are the Same God Who through Your Son healed sickness, blindness, lameness and raised some from the dead…You are the Same God Who sent Your Son to live, die and be resurrected for every single person on this earth….You are the Same God Who GAVE IT ALL (YOURSELF) SO THAT WE CAN LIVE ETERNALLY IN FELLOWSHIP WITH YOU in the new heaven in new bodies. We do not understand the events of the past 24 hrs for Rebecca, but we claim the TRUTH of Who You Are….the GREAT I AM….”

In the Mighty Name of Jesus we offer our prayers for Rebecca and her family….

-Carol Nelson

Out of Surgery

To those who are loving and praying for Rebecca…..
Christyn reports that Rebecca is out of surgery!! Praise the Lord! She is in ICU on a sedation drip. She should rest/sleep through the night. Please pray that this will be a restful night. A sedation drip will allow her to “settle” from all that has been done to her today.
The medical team reported that the surgery went as smoothly as they could have hoped for. Rebecca has been through a HUGE surgery today. Brian and Christyn have been told to expect a LONG difficult recovery. They reported that Rebecca’s colon was so bad, she could not have made it much longer without the surgery. Rebecca had terrible adhesions and multiple adhesions. As reported earlier, they basically fill her entire abdomen. The surgical team addressed this issue today as well.
The positive news tonight is the doctors are VERY HOPEFUL for her now and believe she “has a chance at life”. Hallelujah, thank You Jesus.
The specific prayer request is to pray against infection and any other complications that could arise. Yes, Rebecca, still has a very LONG ROAD ahead of her. May this road be a steady rise to a VERY HEALTHY FUTURE that sees her through Harvard and any other endeavors she might wish to pursue.
“Dear Father…we thank You for what seems to have been a successful surgery. We thank You for the medical team that labored all day over Rebecca. We pray for REST for Rebecca and her sweet parents, Christyn and Brian. May tomorrow somehow be a ‘new’ start for Rebecca…We pray against infection and all potential complications. We look in HOPE at You Lord. Without You, there is NO HOPE and there is NO LIFE. We must have You….we need You…whether we are healthy or ill…whether our circumstances are ‘good’ or ‘bad’…whether we have money in the bank or have nothing…whether at war or peace….whether the sun shines or whether the rain falls….we cannot live without You, Lord Jesus, Holy Spirit, and dear Father.”
Hear our prayers and petitions and thanksgivings…
Hope and healing over Rebecca this night and to all who are in Christ Jesus….

– Carol Nelson

Picture from a month ago – finding out about Harvard acceptance.

Unexpected Major Surgery

Tomorrow morning Rebecca will have yet another major abdominal surgery.

Rebecca’s small intestinal blockage/hernia is not healing so an abdominal surgery is imminent. It was also decided the cause of Rebecca’s last massive infection was due to micro-leaks in her colon that trickled out life-threatening bacteria. This bacterium caused the dozens of abscesses throughout Rebecca’s body that prompted 5 drainage surgeries. Those abscesses and surgeries created irreversible scarring throughout Rebecca’s pelvic cavity (especially around her reproductive organs and bladder). The doctors are fearful this vicious cycle will continue, knowing Rebecca’s constitution is far too fragile to endure another infection of this magnitude. The surgical team does not want to repeatedly open Rebecca’s abdomen more than absolutely necessary, so the plan for tomorrow is:

• Hernia repair in the small intestines
• Readjustment of Rebecca’s ileostomy/stoma
• Full removal of Rebecca’s colon
• Adhesion removal in Rebecca’s abdominal cavity
• Potential full to partial hysterectomy (depending on the permanent damage caused by the abscess scarring)

I can’t begin to process the words I just typed, much less the reality of what those words will mean to my daughter’s already broken body.

We have little choice though as we received the pathology report from Rebecca’s full-thickness colon biopsy that revealed Rebecca had little to no autonomic/enteric neurons present.

Translation: Rebecca’s autoimmune disease destroyed the neurons in her colon to the point there is no hope salvaging it.

Rebecca immediately teared up at the news. Not because she hoped to reattach her colon, she knew in her heart it was damaged irreparably based upon her pain/medication regimen. Rebecca cried because the full-weight of the severity of her disease hit her, “If my disease did this to my colon, what kind of damage is in my other organs?”

And so, we grieved the weight of this news while knowing Rebecca’s colon must be removed in order to treat and thereby stop her disease from destroying even more of her precious body.

Chronic medical illness is a revolving series of grief. Grief in the life you thought you would live. Grief in decreased energy levels. Grief in missed social events. Grief in depressed spirits. Grief at not bearing children. Grief for a broken body. And then grief in losing those broken pieces – one by one by one.

Yet this surgical torture is necessary for Rebecca to live and reminds me of C.S. Lewis’ surgical analogy to God in his book ‘A Grief Observed’:

“But suppose that what you are up against is a surgeon whose intentions are wholly good. The kinder and more conscientious he is, the more inexorably he will go on cutting. If he yielded to your entreaties, if he stopped before the operation was complete, all the pain up to that point would have been useless. But is it credible that such extremities of torture should be necessary for us? Well, take your choice. The tortures occur. If they are unnecessary, then there is no God or a bad one. If there is a good God, then these tortures are necessary. For no even moderately good Being could possible inflict or permit them if they weren’t.”

I choose to believe, not only in a good God, but in a God who is using all of Rebecca’s suffering, all of Rebecca’s torture and all of Rebecca’s surgeries to weave together a beautiful purpose through His ordained timing.

I choose to believe in healing. Healing that involves Rebecca released from the hospital. Healing that involves our family under one roof. Healing that involves Rebecca going to college and living out her God-given calling. And healing that involves Rebecca having quality of life.

Lord, please let it be so.

Regardless of whether our earthly desires for Rebecca come true though, we know there is always hope and healing in Christ Jesus. Our ultimate unexpected miracle.

Prayers for our healing-surgery tomorrow.

Love to each of you,

C

We had a little surprise party to celebrate our wonderful nurse Diego’s birthday before we get transferred to ICU post-surgery.

Vaccination Hallelujahs!!!

Unexpected miracle = Rebecca received the COVID vaccination!!!

Through a series of events that could only be orchestrated by God: between a week of calls flooding the hospital administration and negotiations with key city executives (most especially Kenny Wilson), and meeting after meeting until my voice almost ran out, the administration changed their mind and decided to give inpatient vaccinations a couple of weeks sooner than their original protocol plan. They stated it was the right thing to do for Rebecca, and then expanded the capability for other transplant/cancer inpatients to receive vaccinations as well!

Rebecca made history as the first San Antonio inpatient in the system to receive the vaccination!

Hallelujah!!

The surgeon already declared he was not comfortable preforming surgery on Rebecca without the first vaccination because his surgical team was continually working on COVID patients. In Rebecca’s immunosuppressant state, it is too dangerous to expose her excessively without starting the immunity process. We understand this is a two-part vaccination series process but we are so thankful to time her first vaccination post-plasmapherises treatments.

Thank you Lord for moving mountains to make this happen!

Love to each of you,
C

Christmas 2020

Monday proved to be too difficult of a day to pull off what Rebecca needed. The hospital was not capable (yes, even after 5 days) of coordinating anesthesia for the 2 central line placements. We were prepped and ready to go starting at 6:00 am on Monday morning and waited all day until 3:00 pm when we received the word Rebeca’s line procedure would not happen. This meant her plasmapheresis procedure would be delayed as well as her TPN feeds. Apparently, anesthesia left after Rebecca’s case was somehow accidentally taken off the STAT schedule.

We tried to ride out Rebecca’s leaking IV as long as possible but it blew, infiltrating her arm to 4 times its normal size. We then placed another ‘bridge’ IV in her other arm which blew a few hours later and ballooned her other arm accordingly.  

Bless.

Rebecca was in tears, frustrated, in pain and without proper nutrition as well as her needed immune treatments we have been waiting on since last Wednesday – all because she happened to be hospitalized right before a holiday weekend.

I take a lot of deep breaths and drink a lot of warm tea to keep sane these days.

Rebeca’s lines were finally placed yesterday afternoon and last night we were able to give her first of 3 plasmapheresis treatments.

I have a big prayer request. Rebecca desperately needs the COVID vaccination. Rebecca’s neurologist wants Rebecca to receive the vaccination after her 3^rd plasmapheresis treatment (which is Saturday) so her body will be in the best position to not rev up her autoimmune disease and attack itself. The problem is, although the hospitals have opened the vaccination up to transplant patients – their distribution at this time is only outpatient and not inpatient. A tad ironic because inpatients are living around COVID patients and at a much higher risk for acquiring the virus. University Hospital is filling a huge portion of its rooms with COVID patients and the hospital has cancelled all elective procedures – only emergency surgeries will be preformed here at this time. Rebecca is considered an emergency case so she is safe for treatment.

Please pray the hospital somehow finds a way to acquire a vaccination for Rebeca in the next few days – the doctors are contacting pharmacy, Infectious Disease, etc. but so far – we struggling to find a good answer.

I wanted to end this post by sharing about our Christmas week at home. As rushed as the time was, our family treasured being with each other. We had a delicious Christmas meal delivered by Janet Spivey and her Bible study group – which was wonderfully thoughtful considering I was not prepared to cook even a hot-dog, much less a 5 course turkey meal. We also had a large mystery Christmas tree with lights show up anonymously on our doorstep – that tree was our beautiful token holiday centerpiece in our otherwise undecorated home – a super creative gift.

I only went back to the hospital once – and that was for a happy reason: to deliver gifts on Christmas Day to one of our pancreas patients and treats to our fabulous medical staff. The treats were made by two of my favorite middle school girls – Cameron White and Mallory Moran. Cameron and Mallory started a bakery business called Sprinkles Cupcakes SA and these girls spent a week of their precious, non-school holiday time making boxes of fudge and Christmas cookies for free for the medical staff. The staff was overjoyed at their surprise – most especially when they discovered the age of the servant heart’s that made them!

Sweet Cameron

Sweet Mallory

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Christmas Day Hospital Deliveries

My favorite moment of the week though, was watching the children curled up on the couch with Brian, reading our traditional ‘Twas the Night Before Christmas’ book on Christmas Eve. Brian has read that book to the children many Christmas Eve nights from the hospital room. But this year, THIS YEAR, we were blessed to be home. I had tears in my eyes as I thanked God over and over and over for this unexpectedly miraculous moment.

My favorite Christmas picture

The boys made Rebecca a wooden pancreas for her Christmas present!

Making cookies with Yaya!!

Puzzle time with Papa

Writing this post made me realize – yes we returned to the hospital sooner than any of us wanted, but that fact does not take away from the beautiful memories our family made while we were home. So I will choose to concentrate on our gift of home.

Thank you Lord.

“From the fullness of His grace, we have all received one gracious blessing after another”, 1 John 1:16.

Love to each of you,

C

Attitude Adjustment

Hospital living affords you the opportunity to learn immense patience – or impatience – depending on which emotion you choose to embrace.

All 4 of Rebecca’s main specialists are on vacation and/or isolation due to COVID until Monday. We arrived at the hospital late Wednesday night. Wednesday to Monday is a lot of waiting.

The on-call surgeons are hesitant to touch Rebecca’s anatomy. I don’t blame them. I am hesitant even explaining her anatomy to new doctors – most of the time, they look at me like I have lost my mind because surely what I am describing is not reality. We covet consistency with Rebecca as each separate explanation of her disease can take hours to scratch the surface of her complexities.

This past Wednesday night, the new-to-Rebecca ER doctor kept stating multiple times throughout the night: “I have never heard of such….I am not saying you are lying but I have never heard of anything like this in my entire career. Are you sure?? Maybe you are mistaken.”

The doctor repeated this sentiment about Rebecca’s medication dosing, her surgeries, her diseases, her anatomy, her vascular deficiencies, etc. etc. This was especially comforting to hear as Rebecca was curled up in a ball screaming in pain, awaiting her 6th IV placement attempt in order to receive pain meds. In fact, the doctor questioned Rebecca’s medical history so many times that Brian seriously contemplated blocking entrance to our ER room in order to give our frazzled nerves a break. But blocking the door to a doctor might be considered unkind (or illegal for that matter), so instead, he turned the TV up super loud so Rebecca could not hear the constant shock, awe and disbelief of each new “strange” Rebecca explanation.

Bless.

So, here we are, waiting until Monday where the hospital can finally start ‘normal’ operating hours after their holiday break. In the meantime, we have drained continual fluids from Rebecca’s digestive system trying to lessen the pressure on her distended abdomen and intestines and her pain is under control with her steady stream of IV narcotics.

Rebecca is a month past-due treating her immune system, so we are starting plasmapheresis for the week while we coordinate a more concise plan for potential surgery. Tomorrow morning, Rebeca will go to the operating room for two central-line placements with Interventional Radiology and then we will start her first of three plasmapheresis treatments in the afternoon.

I am not going to lie, I have been in a very bad mood this hospitalization. I am upset our time at home was cut short. Upset our plans with family over the holidays were cancelled. Upset we did not get the rest we needed because we were so busy unpacking from a 104-day hospital stay and catching up on home madness such as bills, laundry, groceries, medical equipment, pharmacies, moving back into a kitchen that was gutted, etc., that many nights I was up working until 2:00 am and therefore never got to the ‘rest’ portion of going home – in fact, this upcoming week that never happened was going to be deemed our ‘relaxing’ week after our hard work moving home. But most importantly, I am upset we had to leave the boys so abruptly and fearfully with Rebecca yelling in pain, carried to the car.

I know I need an attitude adjustment, I am just not ready to accept this situation quite yet. Regardless of my willingness to accept our circumstance though, does not change our reality – like it or not, we are back in the hospital for the foreseeable future. And if we are here at this particular time, God has a reason. He always does. Relying on God’s perfect timing – despite my understanding – is my unexpected miracle.

Thank you Lord. 

Would you please pray for my attitude adjustment, for Rebecca during her procedures tomorrow, and for the specialists making life-altering decisions this week?

We are beyond thankful to you for enduring this arduous journey alongside us.

“Why am I discouraged? Why is my heart so sad? I will put my hope in God! I will praise Him again – my Savior and my God!” Psalm 42:11.

Love to each of you,

C

My precious cousin Katie bought her family Harvard shirts for Christmas to proudly wear them in support of Rebecca! Rebecca was over-joyed!

Not our Best New Year’s Eve

Well, we are back in the hospital and could use prayers. Last night Rebecca started screaming with abdominal pain around midnight- we took her to the ER and got a CT scan and discovered she has an intestinal blockage/hernia of the small intestines.

The surgeons wanted to take Rebecca directly to the OR but we asked to coordinate with her entire team to make wise and not rash decisions.

The consensus today is to wait 24 hours – due to the severe distention of Rebecca’s abdomen the doctors wanted to try and suction out excess fluid and air from newly placed tubes. This should reduce her risks going into procedure.

So, we are back in the hospital for the foreseeable future.

Please pray for wisdom and peace.

This was not how we wanted to spend our New Year’s Eve and the boys are slightly traumatized by Rebecca’s abrupt and pain-ridden departure.

Our unexpected miracle though, was getting to spend Christmas home together as a family – I am asking God to grant us more time at home. Please Lord, heal our Rebecca.

Love to each of you this turn of the new year,
C