Thursday, January 15, 2015

Time Traveler
I am a soul traveling through time.  My journeys have led me here to this point, this hour.  Each time I have traveled, I teach lessons to those who desire the learning.  The wisdom I carry with me grows in each turn until I have full knowledge to share.  I fear not, for I have the light shining before me leading my footsteps each day.  My voice is weak now, so my words will be spoken through my writer.  The notes remembered, will be put on parchment to be read by many.  The song will be sung in grand gesture and loved by all who utter the tune.   Some have asked; if my journey has been fulfilled by now, and I say not as of yet, but it is nearing.  Unfinished work keeps me from moving on.  I am waiting for my last assignment, to hear word from my maker about the last lesson I will teach.  I am preparing for my departure by spreading my wealth among those who love me.  For where I go there will be no need for material joys.  I am preparing for my departure by settling my affairs.  For where I go there will be no need for settling.  I am preparing for my departure by loving my family unconditionally, so they will know all will be well.  My body is weak now, so my mother will carry me.  My mother will feed me until I hunger no more.  I will be covered from the cold by the arms of my mother.  She, will be my last lesson.  She, will be the one who will carry on where I have left off.  Touching those in need, laying her hands to heal the sick, holding the ones needing to be held, lending an ear for voices needing to speak.  Passing no judgment, she will overflow with love and joy.  When I leave, I will watch over her.  When I leave, I will continue to guide her so that she never falters with her quest.  When I leave, I will gently whisper love until her last hour.  Then I will meet her with open arms.  Then we will sit and talk about the times and celebrate the new.  We will have been souls, traveling through time.
I will love you and miss you so much Samantha,


Friday, August 8, 2014

One of the things we did for Samantha was celebrate by having our friends and family donate to the St. Louis Zoo.  
A place where Samantha felt at home with all of the animals. 
Her goal was to finish school and become an Animal Massage Therapist.  
The idea for the bench and a brick (not yet completed) was her brother Jeremy's idea. The money would go to Zoo programs.
 Her plaque and bench are finished.  Ready to be enjoyed by all, we invite you to sit and reflect on the wonders of life. 
 Thank you all for your contribution.
Love you and miss you Samantha.

Tuesday, December 3, 2013

Status today: 
Celebrating the life, the love, the joy, the passing of my sweet girl. 
One year today.
 It's true what they say...."seems like only yesterday". 
I know that she is in heaven, she has been healed of all of her pain. 
Today laughter will shatter all of the sadness I have been carrying this year. 
God Bless you my sweet girl.
 I love you.

Saturday, August 24, 2013

Samantha’s Eulogy

Samantha’s Eulogy

Dear God
we stand before you with open arms
offering to you this beautiful child bride
a child you allowed us the privilege to have
for a short time
to love, to laugh with, to learn from, and to cherish
we will forever be changed because of her
strength, compassion, and pure joy for life
no words will ever express
the gratitude we feel just  knowing her
we know her soul is with you now
what is before us is just the shell
in which you gave her for her journey
here on earth
as she continues to travel
to her destination
please give to us the strength
to carry on without her beside us
ashes to ashes
and dust to dust
her ashes with settle with
her brother, her father, and her mother
a token with be offered to the ocean
to join her mimi and papa

and her memory with live forever in our hearts – amen

From WithIn by Therese Schroeter

 From WithIn by Therese Schroeter

I think we have all had that moment once or twice in our lives, when we knew there was something unusual, different or even wrong going on. It is that inner voice calling to us to listen, to pay attention. I was in my sixth month and we were having twins. I woke up around three in the morning and felt an uncontrollable feeling of loss. The kind of loss you feel when someone you love has died.  For weeks, I felt like crap and I just could not put my finger on it. On my next doctor’s appointment, I discovered one baby had died. It all made sense, that feeling I was having was the loss of my baby. For the next few months, I tried not to think about the fact that I was carrying both babies but only delivering one. Little did I know what fate had in store for my family in the years to come.

Aug 20  Chapter 1
 From WithIn by Therese Schroeter

Samantha Marie was born August 2, 1987 seemingly normal as her apt car score was a 10. Her first six months were just like any other healthy babies life should be. Until one afternoon, after I finished nursing her, she started projectile vomiting.  When I say projectile, I mean across the room.  At first, I thought it was because she might have eaten too fast.  Every time she nursed, it was the same, eats then minutes’ later vomit.  Day after day, something new would present itself, from fever to listlessness, acting as though she was starving to severe constipation.  She could never get enough water, I even thought about devising some sort of bottle holder so she could drink water any time she wanted to without having to signal me by screaming bloody murder because I was not moving fast enough. Naturally, we consulted her pediatrician for advice and help. All of the tests came back bad; the doctor had no idea what was wrong with Samantha and advised us to take her to St. Louis Children's Hospital for further evaluation.  Her chart reflected a diagnosis of "Failure to thrive", which means; the doctor did not know why Samantha was dying. For the next year we slept, ate, and lived at the hospital. Everything they tried failed.  We would go to the ER frequently to hydrate Samantha.  It was going out faster than I could put it in.  We must have gone through a good thirty diapers in a day, maybe even more. At one of our stays at the hospital, a support person came in our room and said it was time to make final arrangements; they were very sorry but nothing more that could be done for Samantha. I remember thinking to myself, "this can't be it". I was not willing to throw in the towel just like that.  This was not something I could wrap my head around.  The day they sent us home was the day I gave her to God. Looking back on that day now seems like it was a moment of defeat, failure, that feeling of loss I had felt before.  I started to do the laundry piled up from our hospital stay and it hit me.  My baby is going to die and there is not one thing I can do to change that.  So I literally picked her tiny body up in my hands and held her up over my head and prayed to God "This sweet child I hold in my hands is not mine, she is yours, you have blessed me with such a selfless gift that I am so grateful for, please do not let her suffer”. Just knowing Samantha for this short time has been a blessing. I gave up all rights to her that day, I asked God to do his will.  My knees grew weak, I crumbled to the floor rocking her in my arms telling her how sorry I was that I couldn't save her, I didn't know how to help her, and that I loved her with every ounce of blood in my body. Even now as I remember saying those words, the tears are running down my cheek because she was never mine to begin with. How can you give something back that God only lets you borrow. Whether our children are healthy or not they are Gods children and we are just the nannies, the caretakers, the safe keepers if you will.

Aug 23  Chapter 2
 From WithIn by Therese Schroeter

Of course when a child is dying the hospital does not leave you on your own to handle everything, comfort is very important, support is very accessible for families and their children.  Like so many days at the hospital, they all seemed to run into each other. Your routine is set as if you were working on an assembly line making toys.  After weeks even months going back and forth to the hospital it feels as if you were going through the motions. Pack your bags, go through the house to make sure you have not forgotten anything, load up the car, drive to the hospital, get checked in, get Samantha situated, Jeremy helps by placing all of the stuffed animals in their special places (a requirement of Samantha’s), now let the day or night begin. On this particular morning we were in our regular room, dad was working and Jeremy in the game room down the hall.  Samantha and I were having fun painting her face while she was getting another blood transfusion and fluids.  I just happened to look toward the door to see this skinny man staring into our room.  I thought "oh great another student coming in to ask more questions".  I know it’s important for the students to come in and ask questions, they need to learn about illness so when they become doctors they will have real experiences to fall back on in their quest for healing.  I was just not in the mood that day.  That skinny man looked at me, then at Samantha and said, "I think she has Cystinosis", then walked away.  I said out loud; “Wait, What? Who was that? What did he say?”  I went to the door to catch this man to ask him what he had just said but he was nowhere to be seen. Maybe I was hallucinating.  I was exhausted after all. So I just let it go and continues to play with Samantha. Later that day one of the techs came in to draw another blood panel. I inquired what the blood draw was for this time and the order said it was for genetics.  I wondered why they needed to look into genetics, we were just there to hydrate.  The day turned to night, dad came by for a few hours while I took Jeremy home with me to do laundry, feed the dogs, and get ready for the next day.  Eleven o'clock that night I just sat down in the chair with my evening cup of coffee, when that same man came into our room.  I got up quietly not to wake Samantha or Jeremy and went into the hallway with him.  Dr. S (we will call him) began to explain the diagnosis for Samantha, Cystinosis with underlying Fanconies Syndrome. Everything he was saying was a foreign language.  Soon after he left I took my notes and went down to the medical library to look up any information I could find. Without getting completely lost in translation, I will explain this as simply as I can. Of course, nothing in medicine can be explained simply as you may know.  Fanconies Syndrome refers to the kidney function by way of the distal and proximal tubes in and out of the kidney. They were faulty; causing the kidneys to fail.  This is why she was not absorbing fluid causing constipation and blockage. Cystinosis is a genetic disorder handed down by way of Samantha's father and myself. Our bodies are made up of cells that amino acids go in and out of creating who we are such as color of skin, hair, eye's, our body size etc. This particular amino acid called cystine, goes into the cell and does its job, when it is time to exit the cell the amino acid cannot find the button to open the door. Because it cannot get out it destroys the cell by turning into an acid compound and virtually burning the cell. Now take that acidic cell and imagine it running through the blood stream bumping into everything, virtually destroying everything in its path just like a horror movie.  Now that we understand what we are dealing with maybe there will be a significant change for Samantha, we could possibly prolong life, maybe even save it.

Aug 25  Chapter 3

From WithIn by Therese Schroeter

Dr. S came in our room the next morning and started to explain the medicines Samantha would be taking to try to correct the imbalance her body was experiencing. IV fluids, blood transfusions, an array of drugs needed to accomplish the balance to combat the effects of Cystinosis symptomatically.  The reason is or was at this time was because they did not know enough about the disease. Renal tubular dysfunction the Fanconies disease requires a high intake of fluids and electrolytes to prevent excessive dehydration.  This was why Samantha craved water and salt.  Some of the medicines Samantha used were sodium bicarbonate, sodium citrate, and potassium citrate to maintain the normal electrolyte balance, which Samantha referred to as the “Tasty medicine”, phosphates and vitamin D for the kidneys and to prevent rickets, and carnitine replacement for muscular deficiency.  To combat Cystinosis and its effects on the body Phospho-cysteamine was the “natural” drug made right there in the hospital until the Food and Drug Administration (FDA) approved Cysteamine (Cystagon) for standard treatment of Cystinosis. Cysteamine is a cystine-depleting agent that lowers cystine levels within the cells. Putting the amino acid in a state of drowsiness. Cysteamine has proven effective in delaying or preventing renal failure. Of course, with Samantha transplant was inevitable and treatment was not an option at the time of transplant.  She was already in renal failure.  Cysteamine also improves growth of children with Cystinosis.  They offered another drug to increase growth but I opted not to use it.  Growth hormone can cause other complications and at that time it was new, I just wasn’t willing to use Samantha as a test subject any more than I had to. Finally, home after living two years at the St. Louis Children's Hospital, settling in to "normal life", Samantha seemed to improve. Playing with Jeremy or dressing up the dogs in her doll cloths and pushing them around in her stroller was a joy to watch. Unfortunately, this only lasted about six months. She was in kidney failure and losing weight by the day. We found ourselves looking in the mirror as the past crept back into our lives. This time there was no magic drug, only the task of preparing for Samantha's death.  At that time, kidney transplants were only for older children and adults, not a two year old that only weighed 11 lbs. No surgeon would even touch her here in St. Louis because she was so small.  Trying to put even a young person’s kidney into an 11 lb child was impossible on top of that; they would not even consider any family member as a donor so they sent us home. I cannot even explain how it feels to watch your child die a little every day, let alone go through it twice in a year’s time. I did try to keep things going as regular as I could, taking Jeremy to his events, having his friends over and just trying to laugh as much as possible. Laughter was good medicine for everyone, especially for Samantha.  About a month later, I answered the phone and Dr. S was on the other end very excited and talking fast. Apparently, he had published Samantha's story in the New England Journal of Medicine and a doctor from San Francisco read the article and wanted to meet Samantha when he passed through St. Louis for a conference. A week later, we met with Dr. SS (we will call him) and he said he could perform the surgery for a kidney transplant. Faster than I could turn around Samantha was on the National Transplant List waiting for a kidney. I wanted to give her mine, but they would not even consider it, knowing this was too big a risk; Samantha probably would not even survive the surgery. You are probably thinking why even try if the odds were stacked against her!  And I say why not, she had nothing else to lose.



Aug 28  Chapter 4

From WithIn by Therese Schroeter

It had only been three weeks after talking to Dr. S., when the phone rang.  It was two O’clock in the morning, the hospital calling.  A kidney had become available for Samantha.  I got everyone up and headed for the hospital.  When we arrived, we went right to our regular room.  I got the bed ready for Jeremy while the nurse took blood from Samantha for a final matching panel.  Everything around us was moving very fast, nurses in and out of her room, final preparations for surgery were being made.  Four O’ clock rolled around and it was time to go to surgery.  Walking down to the surgery was scary, the closer we got to the waiting area the more afraid I was.  When we arrived they explained the process and what would happen after they took Samantha. The first thing they did was have the anesthesiologist come out and have Samantha try different flavors for the oxygen mask.  There was a kind of calm about watching her smell all of the masks and pick one, bubble gum….She smiled as the anesthesiologist let her keep the sample mask.  He put his arms out to take her from mine and she went right to him.  She never goes to anyone but me, not even dad.  He took one-step turned around and she waved bye and blew a kiss smiling the entire way.  As I watched him take my baby, I think I must have stopped breathing, and I could not hear anything, just the sound of my heart beating through my chest.  That moment might have been the last moment I would see Samantha alive.  After I was able to feel my legs and the nausea went away, we went to the waiting room.  This room is very small, especially when you are filled with fear, families started coming in around seven in the morning coming and going all day.  About ten hours into the surgery, the phone rang and it was Samantha’s update.  Dr. SS said she was doing wonderfully, he estimated about eight more hours left, nineteen hours and thirty-two minuets to be exact.  The phone rang again, this time she was in recovery.  I had to go first, I apologized to dad and Jeremy then left the room.  I walked down the hall and pushed open the steel doors and back in the corner, I saw this huge bed (she did not like cribs) with this tiny person up by the pillow. All of the fluids going in puffed her up, I touched her cheek and kissed her forehead and she said “Icthe”,  Ice, she wanted ice….so the nurse brought a small cup of ice chips for her.  She pointed to everything attached to her and seemed proud trying to fight back the tears I nodded and smiled.  I was so relieved she was alive; she made it through a very difficult and daring surgery.  After a few hours in recovery, we headed up to her room.  As with any transplant, there is always that window that the body may reject.  The fact that all of the variables were not in Samantha’s favor made this wait much more intense.  Two days later Samantha went back into surgery for a double nephrectomy removing her own kidneys, which were causing the new kidney to stop working.  A week later, she was sitting up in her bed ready to play.  A month later, we were on our way home to start a new chapter in our lives.

Aug 31  Chapter 5

From WithIn by Therese Schroeter

Samantha’s transplant was life changing not just for her but also for us.  I was able to keep up with Jeremy’s activities now and work on the house, which if you know me this is something I love to do.  Those of you who know how life can be with a chronically ill child, you have a tendency to adapt very quickly to change.  Good change is so welcoming you do not even think about it, it just comes naturally. Dr. S gave us a call and said he wanted to do more for Samantha concerning her illness.  There was a study going on at National Institutes of Health in Bethesda for children with Cystinosis.  The study began two months after Samantha’s transplant.  Dr. S. gave us great ideas to help with our travel arrangements, length of stay, taking one suitcase and our backpacks for Samantha, Jeremy, and mom. We traveled by way of prop planes; this was one way to afford to fly every other week to the NIH.  There are groups of wonderful pilots, angels in the air, who donate their time flying families to and from NIH all over the United States.  Our experience with these pilots was unbelievable.  The pilots flew two hours at a time, earning miles for their airtime, so we always had two different pilots to and from the NIH.  If you have ever had the opportunity to fly in a prop plane, I have to tell you I was terrified every flight, never due to the skills of the pilots because they were amazing.  You can feel everything in those planes, and loud, you cannot even hear yourself think.  Of course, I would never let Jeremy or Samantha know my fears.  They were literally in heaven.  Every pilot included Jeremy and Samantha in the flight via t-shirts, wearing the headset, and sitting in the pilot’s seat.  We stayed at the Children’s Inn in Bethesda.  Which houses free of charge to families attending the NIH.  The set up; designed to help families engage by having kitchens and living rooms all for one and one for all.  Jeremy, Samantha, and myself shared one room with two beds, which by the end of the day at the hospital, was very welcoming.  Samantha’s weeks at the hospital was all about testing and testing and testing.  The Doctors at NIH introduced new drugs to Samantha in hopes to help slow down the process of Cystinosis.  Our study lasted ten years when it was stopped abruptly because one of the drugs had finally been approved by the FDA  “Cystagon” and Samantha suffered a severe allergic reaction to the preservative in the drug making it impossible for her to take, therefore we would no longer be able to stay with the program. I tried lobbying for Samantha in Washington in hopes they would allow her to stay on the natural form of the drug so she might be able to stay with the program.  I even found a Pharmacist with the help of my mother in Oregon that had the lab and equipment to make the drug in its natural form.  No matter how hard I tried, Government won and Samantha lost.  So back home we went and stayed, no longer receiving the benefit from the studies from the NIH.  It was to say the least very heartbreaking.  Without that drug to slow down the process, I had no idea what her life expectancy would be now.  

Sept. 2   Chapter 6
From WithIn by Therese Schroeter

So from age ten to age sixteen, I would try to make life for Samantha and our family as normal as I could.  We went places, we had friends over, we went shopping, we participated in school activities, all having fun!  Unfortunately, during all of the fun we were having, Samantha’s father and I were going through a divorce.  Everything life tossed our way we managed to overcome and continue as we had in the past with as much positive thinking as possible.  Families that have children with chronic illnesses or life threatening diseases know that you adapt to the flow of constant changes.  There is no definite, there is only the assurance that you are doing your best.  Of course, you never really know what your best could have been until years later.   As the years went by only having to take medicine for the kidney transplant we almost forgot Samantha was ill.  Life was, wonderful!  Until the year, Samantha turned sixteen she unknowingly went into kidney failure.  She was in full-blown failure by age seventeen.  The doctors at Children’s Hospital tried to figure out what had happened and were diligent in their efforts to correct the rejection without success. In the end, Samantha lost function of her transplanted kidney.  One of the interns stopped one of her meds accidentally.  You cannot go back in time and reverse every action so you once again take on the next challenge.  Disappointment, frustration, and the threat of death creeps back onto our doorstep. 

Chapter 7
Local news 2
A New Kidney: The Best Birthday Present Ever
By Matt Gamewell,

July 28, 2007, 9:38 PM CDT

Organ donation is often called the gift of life. Next week, a North County woman is getting that gift a second time. Beating the odds is nothing new for Samantha Schnettgoecke, of Dellwood. She's fought a little known, but deadly disease, her entire life. Now she's about to get the upper hand on it thanks to a generous friend. In just a few days, Samantha is getting a gift that keeps on giving: a new kidney. "I'm very excited because I'm getting a transplant on my birthday, on my 20th birthday," she says. This is her second kidney transplant; the first was at age two. That kidney lasted 16 years. Now a replacement is a necessity because Samantha suffers from a rare genetic disorder called Cystinosis, a devastating condition that has already destroyed two of her kidneys. Samantha's mom, Therese Schroeter, is her biggest ally and her constant companion. "Most of these kids that have Cystinosis, that have it as bad as she does, don't make it past their teens," she says. "So this is a huge, huge step for her." Samantha has spent the past three years on dialysis, needing four hour treatments three times a week. "It just really drains you of all your energy, so it makes you really tired and really hungry," she says. Despite those obstacles, the youngest patient at DaVita Dialysis, in Florissant, is described as one of the most inspiring. "She's a very motivated patient, very encouraging, very loving and just a really smart patient to work with," says Renella Ballinger, her patient care technician. "I just really enjoy working with her and caring for her." Her fighting spirit is what prompted a family friend to promise her own kidney to Samantha. Colleen Steele is a family friend who taught Samantha art at Griffith Elementary School in the Ferguson-Florissant School District. "We hadn't seen her in a few years and she showed up at Christmas time, and we told her what was going on and about a week later she said she was going to get tested to see if she was a match," Samantha recalls. Steele is a match and the transplant was set. "She is giving something of herself to allow my child to live," Therese says with admiration. "I don't know that there are words to actually express that, how fantastic it is, and it is a gift of life." She adds, "If Samantha were to stay on dialysis, the outcome of her life would become grim, I don't know that she would last three years." With the promise of brighter days ahead, and an improved quality of life, Samantha has big plans, but also looks forward to simple pleasures. "I can actually go out without getting too tired or actually watch a movie without having to stop halfway through and go to bed." Once she's out of the hospital, Samantha can't wait to get back to her studies. She's working on becoming a veterinarian's assistant and wants to work as a massage therapist for animals. She also wants to become an actress.
Copyright © 2007, KPLR

Chapter 8
Local news 1
Samantha Schnettgoecke
The gift was a kidney, and the teacher is Coleen Steele, 51.
She’s an art teacher who turned a friendship into a life saving bond.
As she sits at home recovering Samantha Schnettgoecke is feeling better.
The symptoms of her kidney disease are now faded after a gift from a teacher.
"In all the years she was my teacher I never expected her to give me anything like
this, so she's really great,” Schnettgoecke says. For Schnettgoecke it was no small miracle that her former art teacher turned out to be a perfect match For a kidney transplant, months earlier doctors at Barnes Jewish Hospital had told her that her condition was worsening and the wait for a kidney transplant on the list was anywhere from three to five years. Schnettgoecke says, "When she did match I still couldn't believe it, it didn't hit me until I got out of surgery really."
The surgery at Barnes lasted hours last Thursday, and was a success.
Schnettgoecke, 20 is now no longer in danger. "I know that down inside, I really, really saved Samantha's life," Steele says. Schnettgoecke continues to recover at home.  Both she and her former art teacher were released from the hospital Tuesday.  Steele says she'll miss the start of the school, but plans to be back teaching art at Griffith Elementary in Ferguson by the end of the month.

Chapter 9
Local news 3
Teacher donates kidney to former student David Kennedy photo –
Samantha Schnettgoecke (right) gives a hug to Colleen Steele, the Griffin Elementary School art teacher. Steele donated one of her kidney to Schnettgoecke this summer. Samantha Schnettgoecke now can dream about a career, shopping and boys - about life beyond the boundaries of a dialysis machine.  Samantha, 20, of Dellwood, underwent two kidney transplants, the latest on Aug. 2, that were miracles of modern medicine.  But these miracles wouldn't have happened without what Samantha's mother, Therese Schroeter, calls their "angel in disguise."  Colleen Steele is the latest angel to appear just in the nick of time. Steele, an art teacher for 22 years at Griffin Elementary School and one of Samantha's teachers, gave Samantha the gift of one of her kidneys this summer. It replaced a failed kidney that Samantha received when she was 2.  "Everyone asked me why," Steele said last month, a few weeks after she had returned to her classroom after recovery. "God was telling me that this is what you need to do."  Schroeter said angels began appearing when Samantha was 6 months old, when doctors told her parents that she probably wouldn't live.  "This scientist-looking doctor walked by the (hospital) room and said, 'Hey, she looks like she's got Cystinosis, and then walked off," Schroeter said.  Tests led to a diagnosis of Nephropathic  Cystinosis, a rare kidney disease, and the beginning of treatment.  "And he basically saved her life," Schroeter said. "That was our first angel in disguise."  Others appeared when St. Louis Children's Hospital agreed to perform a kidney transplant, a rare operation on a 2-year-old who weighed 11 pounds. The kidney lasted 16 years.  It finally failed two years ago.  To stay alive, Samantha was hooked up to a kidney dialysis machine three times a week and was placed on a transplant waiting list.  Life was difficult. Samantha was exhausted much of the time, often confined to her home.  "Even watching a movie (at home). I had to stop. It was so tiring," she said.  Schroeter, a single mother who works at Schnuck Markets in the seafood department, put it bluntly.  "She was dying literally before our eyes," Schroeter said. "That three- to five-year wait - I doubt she would have made it."  Even more daunting was finding a perfect organ match so there would be less chance of rejection.  "I didn't think there was going to be a match," Samantha said. "It was very stressful because there are so many tests you have to go through."  Steele had been out of touch with Samantha and her mother when she decided to knock on their door on Christmas Day. Over lunch, Samantha told her what was going on.  After that visit, Steele, 51, of Elsberry, visited her doctor to see if she could be a donor. After exhaustive testing, she learned that she was a perfect match.  Steele's husband and two grown daughters accepted her decision.  "They were very proud, scared and worried," Steele said. "I didn't worry at all. I put my trust in God. It was good to do what I needed to do."  Steele spent much of her first week back in class answering questions from her students. She also showed them her hospital souvenir-a small white scar.  "A little keyhole around the belly button, not bad at all," Steele said. "I'm not bragging, but I'm very proud of it."  Life hasn't changed for Steele.  "If anything, it makes me more aware that I need to drink more water and have more exercise - just things we already know.  "I can't play football; I couldn't play football before," she said, laughing.  Samantha's prognosis with her new kidney is better because it came from a live donor. Steele's kidney also was very fit - operating at 128 percent of capability compared to a normal 80 percent in most adults.  "You've got the bionic kidney, the kidney of steel," Steele chided Samantha, raising her arms.  Meanwhile, Samantha and her mother are in another stage of recovery.  Samantha can walk and get around. She doesn't get as tired, and she can eat things as never before. Her father, William Schnettgoecke, and her big brother, Jeremy Lee, a member of the Missouri National Guard who served in Iraq as a medic for the 82nd Airborne Division, also are there to support her.  "You know, I was talking to my girlfriend the other day, 'What am I supposed to do when she (Samantha) gets well and starts running around?'" Schroeter said. "I have no idea."  Actually, they do have ideas. Schroeter may go back to school, perhaps to become a teacher. Samantha wants to continue to study message therapy for animals - and maybe become an actress.  "We are living the same life, basically," Schroeter said. "Neither of us has a boyfriend - that's on the list but not high. We'd like to be kissed as least once."
Brian Flinchpaugh

Sept. 4  Chapter 10

From WithIn by Therese Schroeter
Letter to one of the NIH Doctors:
Could you tell me more about Samantha?

After leaving NIH without eye drops and Cystagon, having had an allergic reaction to both, I made sure that she kept up with all of her transplant meds. Still at St. Louis Children’s Hospital, at age 16 she went into renal failure due to a mishap with prednisone, it was not refilled by one of the interns (mistakenly of course) but too late to save the kidney. Due to the heavy dose of prednisone to try and save her kidney she developed diabetes and had to start giving herself shots of insulin. From age 17 to 20 she was on dialysis. She had a graft put in her arm because her veins were never large enough to create the fistula needed for dialysis. She did very poorly and began to fail by the time she was 19 ½..  Amazingly, during this time she managed to graduate high school with Honors, 3.98 GPA. Her grade school art teacher and very good friend of mine, decided to donate her kidney to Samantha to save her life. The transplant took place on Sam’s Birthday (she turned 20 that day). Sam is now 23, and has done very well these past few years. Other than her hearing in her left ear is 0%; she is about 40% in her right ear with the help of a hearing aid. Her sight has diminished over the years, photophobia is more intense, she can just see shapes, no colors, and very blurry. Swallowing has been about the same as when she was young, very difficult, I need to cut everything up small and make sure she has fluid to drink to help her swallow so she doesn’t choke.  She fatigues very easily, continues to sleep during the day (nocturnal) up at night, easier to function (no light issues).
This past year she has also had severe migraines (more than usual about 2 a week or more at times) and is experiencing small strokes and seizures. These episodes render her paralyzed (she cannot communicate normally), memory loss, difficulty swallowing, and shortness of breath. These normally last about a min. with the after affects last up to two hours. These started when she was on dialysis.
Recently she has had a change in her BM. About a month ago the color changed to yellow and chalky just as it was before she had her first kidney transplant.  That’s about it for now.  I’ll write again when other changes occur. 
Thank you again for your time.
Therese Schroeter

Chapter 11
“Question and Answer”
Samantha wants to know what happens to the kids that die with Cystinosis, what do they go through?
Response note from Cystinosis Research:
Dear Ms. Schroeter,

In response to your question about end-stage Cystinosis, the medical experts have informed me that from a medical standpoint, the principles are the same as in other conditions at end-stage. Most of the problems will need to be dealt with by a Nephrologist and Pulmonologist; it would be important to have good relationships with trusted people in those areas. Also, keep in mind that hospice services may be useful, not just at the end, but in providing support and respite for the care providers, and comfort for the patient.
Our thoughts are with you and your daughter at this difficult time.
Cure Cystinosis International Registry (CCIR).

Chapter 12
Humanitarian Award: Coleen Steele
Dear Samantha,

It was nice to meet with you today during the award ceremony and TV
interview. Enjoy your life and explore the new world.
Genda from Missouri Center
The Supreme Master Ching Hai International Association

Chapter 13
From WithIn by Therese Schroeter

Surgical and Medical History Time Line:
Samantha Marie Schnettgoecke
08-02-87: Birth
2-15-1988:  Onset of illness without diagnosis. Vomiting, diarrhea, high fevers, uncontrollable thirst for water, chalky white stools, weight loss.
7-6-1988:  Diagnosed with Nephropathic Cystinosis underlying Fanconi’s Syndrome.
1-8-1989: Port-A-Cath placement in her chest
1-31-1990: Renal Transplant
4-24-1990: Bilateral Nephrectomy ( double kidney removal)
5-4-1990: Replacement of Port-A-Cath, and nasal tube feeding started
1991: Started NIH research study for Cystinosis
1998: Diagnosed with PTC cerebrospinal fluid increased pressure on the brain. Kidney rejection, Steroid induced Diabetes.
2006: Dialysis begins/diabetes ends for the duration of dialysis (prednisone stopped)
8-2-2007: Second Kidney Transplant, Serum Syndrome-(rabbit allergy)
2007: Declared Legally Blind and Deaf. Started learning Braille, Diabetes returns after starting Prednisone.
2008-2010:  T-I-A Diagnosis, seizures, migraine increase
1-31-2012: Port-A-Cath placement in chest
2-1-2012: Home infusion services began
2-24-2012: Asthma diagnosed
3/2012: Stroke, g tube placement, minimal oral intake, home healthcare started, therapy started
4/2012: Seizure activity increases
8/2012: advanced migraines, vomiting, diarrhea, constant pain, significant weight loss, 68 lbs

Sept 9 Chapter 14

From WithIn by Therese Schroeter

I would like to change gears for a moment to share some events that happened while Samantha was young.  Enjoy!

A typically benevolent celestial being that acts as an intermediary between heaven and earth, especially in Christianity, Judaism, Islam, and Zoroastrianism. A representation of such a being, especially in Christianity, conventionally in the image of a human figure with a halo and wings. angels Christianity The last of the nine orders of angels in medieval angelology. From the highest to the lowest in rank, the orders are: seraphim, cherubim, thrones, dominations or dominions, virtues, powers, principalities, archangels, and angels. A guardian spirit or guiding influence. A kind and lovable person. One who manifests goodness, purity, and selflessness. (dictionary)


The vital principle or animating force within living beings. The soul, considered as departing from the body of a person at death. (dictionary)


The spirit of a dead person, especially one believed to appear in bodily likeness to living persons The center of spiritual life; the soul. (dictionary)


The state or quality of having existence. Something, such as an object, an idea, or a symbol, that exists, is thought to exist, or is represented as existing. The totality of all things that exist. (dictionary)

The Being, the Ghost, the Spirit, and the Angel:
Exodus 23:20-“See, I am sending an Angel before you to lead you safely to the land I have prepared for you.” (bible)(reference web page here)

My whole life I have always been sensitive and open to others that no longer dwell on this earth.  I have always thought of it as a gift not to take lightly.  I don’t advertise this gift I respect the privilege of being able to help.   When I am not clogged with earthly static I can focus clearly on those that wish to speak or send messages through their light.  While Samantha was young, I was very in tuned and our house was an open door, not just for the living but the spirit world as well.  
One of the fondest memories I have is when Samantha, Jeremy and myself were visiting my parents in Poulsbo.  All of the children (cousins to Jeremy and Samantha) were sleeping in their sleeping bags on the living room floor and I was on the couch.  I had just turned over when I was awakened by the silence (the crickets stopped chirping) and I saw a woman hovering over Samantha.  At first, I thought it was my mom or my sister until she looked up at me.  She was wearing a long gown in muted colors flowing very beautifully and delicate.  She had Samantha’s hand in hers; she smiled and dissipated into the night light. My heart was racing and I could not breathe for a moment.  I was trying to figure out what she might have been doing here, or if I was dreaming, or just delusional. I stood up, went to the kitchen to get a glass of water, went to Samantha, kissed on the forehead and went back to the couch to sleep.

Sept 8  Chapter 15
Samantha was about two years old when we were at one of our stays at Children’s Hospital.  We had a roommate this time, a young girl about Samantha’s age that was a ward of the state.  It never takes very long for children in the hospital to become friends.  This little girl had cancer among other issues with her health. I think the worse thing is that she had no one to care for her, no one to love her.  Samantha soon became that person for her.  They talked and laughed in-between feeling lousy of course until they fell asleep.  This night the girls were quiet, just the sound of the IV machines running.  It is amazing how you can fall asleep to the beeping and gurgles of the IV’s.  It must have been about two in the morning when Samantha’s IV finished and the alarm was sounding.  I got up to silence the alarm and I noticed Samantha and the little girl were awake.  They were pointing and smiling to each other.  Then they started waving to each other.  I did not say a word hoping they would both go to sleep.  Kisses were given to both Samantha and her friend and I went to bed, again.  It could not have been more than a half hour when Samantha called out “Mom”.  Turning over I said, “What”.  She said mom again so I got up to see what she wanted.  She said, “Look”, pointing to her friend, I told her “Shhhh she was sleeping”.  Samantha said, “Bye bye”, and waved at her friend.  I went over to the little girl to check on her, to assure Samantha that she was fine.  My heart fell, she had died.  I looked at Samantha and wondered how she knew.  I called the nurse in and Samantha and I took a walk down the hall to the game room.  When we went back into the room, I put Samantha back to bed and tucked her in.  She put her tiny hand to her mouth and said, “Shhhhh”.  I nodded my head and said go to sleep now.

Sept 8 Chapter 16
One night soon after we arrived home from the hospital Samantha woke me up talking in her room.  I got up to see what she was doing to try to get her to go back to sleep.  She was at the foot of her bed, mind you, it is a twin size bed, she only lasted a short while in the crib, and she would have nothing to do with a baby’s bed after experiencing one at the hospital.  They are cages actually, so the kids do not get out.  I do not blame her; I would not like them either.  Anyway, she was on her knees at the end of the bed with her hands on the footboard as if she was really into a conversation, her body language was in an excited state.  I must have startled her when I went into her room because she jumped and then started laughing then threw herself back toward her pillow saying, “night night”.  I said; “yes night night” as I smiled at her shaking my head yes.  I tucked her in with her favorite doll that she squeezed tightly and began to tell me about her friend.  I told her it was time to go to sleep, in my motherly voice.  She looked at me with the most serious face, clinched her teeth and shook her head no.  She was going to tell me about her friend weather I liked it or not. So I thought, ok, I‘d humor her about this imaginary friend. I asked her what she looked like and she told me he was shinny bright, with shinny shoes.  She loved his shoes apparently because she smiled when she described them to me.  I asked her what she was talking about with her friend.  She said he loved her and then she got out from underneath the covers and got on her knees, put her hands on my face and said, “Its ok mommy”. “What’s ok baby”, I said.  “Me”, she said. Then she got back under the covers, put her arms out for a hug, a kiss, and our conversation was over. 
Up until this point neither of my kids had imaginary friends.  I remember growing up hearing stories about my sister who had an imaginary friend; he was talked about for years at the dinner table.  I did not think any more about it that night and went to sleep.  The next day came around, business as usual; at least I thought so until I saw Samantha in the living room going through all of my magazines.  I asked her what she was looking for and she told me she was looking for a white chair.  I told her we did not need any more furniture, she scowled at me and told me it was for Jesus. I chuckled to myself and thought, ok, I’ll bite.  “Why does Jesus need a white chair”? I said.  She told me he was going to talk to me and he needed it to sit in.  Duh, was the look I got from her.  So I said, “ok” and went back to what I was doing.  Thinking to myself, oh great, now Jesus is going to tell me it is time for him to take her from me and Samantha is helping him with this event.  For a few years after that, she continued to look for that white chair and talk with her friend in the middle of the night.  I never bothered to get out of bed after that, just hollered, “go back to sleep”.  Time had passed, her friend disappeared and she never found that white chair. Halleluiah!     


Sept 8 Chapter 17
I will always be grateful to those who have passed because they send us messages all of the time.  We’re not always listening like we should be.  I know I feel my mother on occasion, scolding me, I am sure, but I know she is there.  Another way spirits work through us is when we reverence their words right out of our own mouths.  Sends a chill down your spine, even makes you say, “Alright, I hear you”!  I believe that God has had his mighty hand on Samantha.  I believe the Being, the Ghost, the Spirit, or the Angel gives me a sense of feeling safe.  I wish you well with your spirits and hope you have an open heart to receive and an ear to listen.

 Sept 9 Chapter 18

From WithIn by Therese Schroeter

When Samantha was diagnosed with Cystinosis and the transplant was successful, the real work of family began. I found myself juggling everything from getting Jeremy to and from school, keeping up with his activities, keeping the house clean and in good repair, back and forth to the hospital, pharmacy, grocery store, among other regular goings on a family participate in. Over the next few years, I saw less and less of Bill. He became engrossed in his work, which called him to travel often. This situation left me alone all of the time. Not that I was not able to handle the challenge, it was not the idea I had in mind as far as a marriage and a family. So a new family emerged from this shift in our relationship. Only two or three trips was Bill able to make to the NIH out of the hundreds made over the years. Traveling with Jeremy and Samantha via bi-planes, buses, or trains was not an easy task. I found myself exhausted, discouraged, and mad most of the time when it came to Bill. At the time, I did not realize he just simply could not handle the stress and demand created by this disease that Samantha was carrying. My bitterness grew and grew to the point where I thought it would make more sense to just let him go. I thought about divorce for about a year before I told Bill I no longer wanted to be married to him. Naturally, he did not handle that well. I was not expecting it to go smoothly. It was a conviction I felt strongly about and it was far too late as far as I was concerned to try to fix the relationship.  I know now what I did not know then, he did not want this divorce, he wanted to be a family, he just didn’t know how to do that.There were times when I wished I could have gone back in time and maybe could have done something different. Today our relationship is much better. We are better at being friends than married to each other.


Sept 9  Chapter 19

From WithIn by Therese Schroeter

 I started substitute teaching in our local school district and was able to work in the district until Jeremy and Samantha graduated from high school.  While working for the school district I became involved in the Theatre department.  I made the costumes, helped with set design, worked with the vocals, and conducted the orchestra. After the first year working with the director, I was named the assistant director, what a thrill it was.  Jeremy and Samantha were both involved as performers in the musicals and small productions.  I think it was the glue that brought us together as a new family.  During that time, Samantha was “doing fine”, as fine would have it.  Slumber parties, trips to the zoo, living was what we were doing.  After Jeremy graduated high school, he enlisted in the Army, 82nd Airborne.  He became a medic and when 911 devastated our country, he was diploid to Iraq.  Three and a half years later or so he came home, alive and in one piece.  That was a difficult time for me personally.  Samantha and I made cards and sent as much love as we could.  When his term was up, he did not re-enlist with the Army he instead jumped the fence to the Air National Guard, where he remains today.  During my employment with the school district, I began a summer day camp in our community.  Of course, all of Jeremy and Samantha’s friends were either campers or camp counselors. Intermittently I also worked with the street department and the recreation center when I was not substituting teaching. It was a full few years and we were having a grand time.  I changed jobs and started working for a family owned grocery store in the Deli, Seafood, and Meat departments. Then the unthinkable happened, Samantha lost function of her transplanted kidney.  It was a tough year for her.  Our store was closing and I was being transferred to another store about 20 minuets away.  This would not have been a problem any other time, but now I would have to figure out how I was going to get her to dialysis three days a week without her doing it all alone.  It took some smart talking and downright begging to make this all work out, and somehow it did.


Sept 12  Chapter 20

From WithIn by Therese Schroeter

Samantha was almost too old for Children’s Hospital, we were now in need of an adult hospital, and another doctor to follow her is what they told us.  So now, I am left with trying to find a new hospital, a doctor, and a dialysis unit.  This task was very difficult to do because she was not eighteen yet, no one would take her, and Children’s Hospital would not start dialysis on her because she was almost eighteen.  This whole thing sucked, to find a better word would diminish my feelings about being thrown out into the world without guidance.  They dumped her plain and simple.  So I went shopping, I did not have much time, only a few weeks to be exact and Samantha was getting worse by the day.  When a body goes into renal failure, major organs begin to malfunction, fatigue sets in, and the body starts to accumulate fluid making you feel like crap. Death inevitably follows. I tried to talk Children’s Hospital into at least getting her started on dialysis but they would not even give me an audience.  Then I went to Big Barn’s Hospital and frankly, I was so intimidated I walked right out of there. She was not old enough they said.  It was like Jack walking into the Giants castle, everything was so big and very unfriendly, I was lost, scared and mad.  As far as dialysis units, the choices are limited here in St. Louis and none of them would take her.  They would have made an exception because she was almost eighteen, but she was so small and had no veins to make a fistula they turned us away, unit after unit.  I was frantic, this could not be happening, I was not going to let the medical world, the world that was supposed to help save lives, let my baby die.  What do I do?  Well, I did what most people would do, I cried and cried.  Then I pulled myself together and went down the street to the dialysis unit I had gone to before and begged them to take Samantha.  They said what I was trying to do was against the rules and there would be no way to accept her, no was the answer.  Before I walked out of the unit, I asked them for a doctor that followed dialysis patients.  As soon as I got home, I called and made an appointment the following week.  The visit was not going the way I had hoped it would and I broke down and cried uncontrollably.  I think I must have hit a soft spot because before I walked out of the waiting room he called me back and said he would get her started until I found a doctor to follow her.  So naturally, I cried again, and this heavy feeling had lifted, joy came over me like a wave from the ocean. 

Sept 12 Chapter 21

From WithIn by Therese Schroeter

Now that we were in the door, so to speak, the doctor and the staff had to create the special circumstances for Samantha’s fragile body to accept the dialysis.  As I told you previously she had no veins to make a fistula.  A fistula is what the veins become when you create the flow of fluid that washes the blood.  It is amazing; the machine takes the blood out of the body runs it through a filtering system, actually washes the blood then returns the clean blood back into the body.  Two needles are placed in the arm, one going north, and the other going south.  Saline solution is added to the mix as the blood returns to the body.  The concept behind this system is to take all of the poisons our body creates through intake that typically we discard through our urine then returns it clean to the body.  The ultimate situation would be to have dialysis daily as we urinate daily.  However, this event is very stressful on the body so they give the body a break every other day.  Dialysis allows the body to recover and function more normally, hence; live longer than without the process.  There are complications with however, when the body goes through dialysis the pressures and volumes change.  Along with taking the poisons out of the body, it also takes the stored fat.  When a person such as Samantha, needs that stored fat, they lose a tremendous amount of weight causing other complications.  There are medicines that help counteract those complications creating a somewhat balance.  As for Samantha before she could start dialysis she had to have a graft placed in her arm that simulates the fistula, made of rubber tubing.  Because her body was in a state of emergency, the graft was placed in her arm that week.  The staff at DaVita were amazing in their efforts to make Samantha’s experience as successful as possible.   There were challenges and fears among the staff however, Samantha was so tiny, I felt the staff had reservations when it came to accessing her arm.  To help alleviate their fears, I learned how to place the needles in her arm very quickly.  The less stress involved in this process, the better it was for Samantha.  Unfortunately, there are changes in the staff just as there are in any other job.  To our benefit, we were fortunate to have two new staff members that were not the least bit afraid of Samantha’s special circumstances, they accessed her the first day and from then on giving me the opportunity to sit and help make Samantha comfortable for the four-hour process.  The next task was creating her schedule that would work with my work schedule, and thanks to my bosses generosity I was able to make this happen so I would be there at every sitting.  Another complication Samantha experienced was finding a balance with the saline solution and the heparin to thin the blood.  If you do not return the right amount of saline cramping and a drop in blood pressure occur putting the person’s body in a state of shock.  It all becomes mathematical; the formula is created and applied to the process.  Unfortunately, mathematics is a stable format where the body is not and changes daily so the formula needs to be tweaked at every sitting.  When the heparin was given to thin the blood there were times, many times when the needles were pulled and bleeding could not be stopped.  Luckily, there is a hospital nearby where we became very well known to the staff when Samantha needed help clotting her blood to stop the bleeding.  Sometimes we were in and out, other times it took hours to stop her bleeding.  Samantha was on dialysis for almost four years and was not doing well.  We asked to be put on the transplant list but she was rejected because they said she was too high a risk and probably wouldn’t live long enough to receive a kidney due to the fact the waiting list was anywhere from three to four years long.  Once again, we were faced with the fact that she was going to die and there was nothing we could do to change the circumstances.  Nasty death monster just was not going to leave her alone.


Sept 13 Chapter 22

From WithIn by Therese Schroeter

Today, when you “Google” Cystinosis, there is a plethora of information, wonderful stories of families, newsletters, conferences, and so much more information than there was when Samantha was diagnosed.  I am almost jealous because these families have so much more now to help them and we had virtually nothing.  Samantha was writing her own story, one that would be shared well after she might benefit from any information available now.  Her story remains unique, because she did not follow the typical life pattern of most children with Cystinosis. Due to the fact, she was actually diagnosis with the proper disease and not some other illness, which unfortunately was not uncommon. She did not die when she was two years old as most did with Infantile Cystinosis because they were not diagnosed properly. She had a kidney transplant at age two that saved her life and put her on a completely different path.  I guess you could say we were in the right place at the right time.  Then again, maybe Gods hand reaches places we do not realize!  I love reading all of the stories now and I am truly grateful to all of the research that has gone on in the past 25 years.  Even though this disease is difficult to diagnose, eventually some doctor will remember what he or she read somewhere and it will start the ball rolling for that child who has Cystinosis today.   Because Samantha made it through the first wave of this devastating disease, the doctors were intrigued with the state her body was experiencing.  She was the first child, age 2, and only eleven pounds to have a kidney transplant at the St. Louis Children’s hospital.  The event was truly an experiment the doctors were excited about doing.  Of course as a mother, fear was the main topic in my mind and praying hard for the doctor’s steady hand and stamina.  Having had the opportunity to use the Phospho-cysteamine after transplant I believe did benefit Samantha.  I just wish she could have been able to tolerate the Cystagon approved by the FDA having had an allergic reaction to the preservative in the drug.   When the eye drop therapy began to fail because the medicine was deteriorating the fine layer in her eyes making opening and closing her eyes very painful, was our marking point that there would no longer be any help for Samantha concerning her disease.    Besides the care she would receive for her kidney transplant and dialysis today she has not been a benefactor of any research or medication for Cystinosis.  Because Cystinosis is considered an “Orphan” disease it is simply too expensive to take care of just one child.  She has lost her hearing, 100% in her left ear and 89% in her right from long-term medication use, and has been categorized as legally blind seeing only shapes around her.  As each year of her life has moved into the next you can see the toll Cystinosis had taken on her body, but definitely, not her spirit. 

Sept 14 Chapter 23

From WithIn by Therese Schroeter

Coleen is and has been part of our family from the time Jeremy started grammar school.  She is the art teacher.  Because I made it a point to always participate in Jeremy and Samantha’s activities, we became very close friends right away.  I am sure having her as an artist and I as an artist of sorts we found our common ground.  We had known each other for about 20 years that year.  When she realized Samantha was at another dead end she proposed the solution.  I immediately said no.  Think about it for a minute, your friend wants to donate an organ.  The idea itself is wonderful, renders you speechless, however; what if something happened to either one of them in surgery or the transplant for some strange reason does not work and now your friend is without that vital organ.  This kind of decision is not one to make lightly.  Apparently, Coleen went forward with her decision after talking it over with her family and she started the testing process.  Two weeks later, she came over and said she was a match and she was making the appointment for Samantha to get another chance at life.  I did not know what to say, so I hugged her, laughed, cried and hugged her some more.  August 2, 2007 was the date, and to top it off that was Samantha’s 20th birthday.  How was this possible?  Too cool for words!  Both Coleen and Samantha were in the pre-op waiting room sharing Samantha’s birthday with all of the staff at Big Barns Hospital.  I had tried to leave the waiting room so Bill could come in and sit with Samantha until it was time, but Samantha would not not allow me to leave.  So I tried to talk the head nurse into letting Bill and I stay in with Samantha, but she said it was against regulation only one person at a time and it would not be possible.  I tried to explain to Bill and the family, but naturally, I was the bad guy, it was my fault and how selfish I was etc. etc. etc.  So, I gave up even trying.  Surgery was over for both of the girls in about 12 hours.  Waiting this time around was not as stressful as when she was two years old.  In addition, I think over the years my faith had grown and matured so I trusted God would have his hand over the procedures and the girls.  Neither one of them were in the recovery room for very long, just so you know I made sure Bill was the first person to see Samantha after surgery so I wouldn’t be prosecuted again.  Samantha was not a baby anymore and as far as she was concerned, she was running the show this time.  We were only in the hospital for about a week and we went home.  About two days after we were home, she started experiencing some discomfort early in the morning. By the time mid-afternoon arrived, she could not move at all, pain was excruciating and we went back to the hospital immediately.  As soon as Samantha described what she felt, they knew right away, what the issue was.  Serum Syndrome Sickness, in layman’s terms an allergic reaction to Rabbit Serum given at the time of transplant.  A drug they use today to speed up recovery after transplants. Samantha still had her graft for dialysis so they went right to cleaning her blood for about 6 hours and gave her medicine for allergic reactions.  That 24-hour period from beginning to end was the worst day Samantha had ever had in her whole life, is how she says it.  A few more days in the hospital and we were home bound again, this time for good.    

Sept 15 Chapter 24

From WithIn by Therese Schroeter

For the first three years after the second transplant, everything went beautifully.  Life as normal as normal can be.  Man, it felt great!  Just before Christmas 2011, Samantha started to experience nausea and vomiting to the point of dehydrated.  Cystinosis was at it again.  She had a port-a-cath put back in her chest and started IV fluid therapy at home. Everything she was experiencing was reminiscent to her younger days before we found out she had Cystinosis.  Focus for therapy was the transplanted kidney and of course her comfort.  This worked wonderfully as she slowly got back on track and off the fluid and then in March, she had a stroke.  When it rains, it pours!  The decision to transport to the hospital was against Samantha’s wishes, she had made it very clear NO MORE HOSPITALS. Choosing another direction for Samantha would be crucial to her recovery.  Big Barns was the perfect choice for transplant, but I needed the experts for stroke, which in this case was DePaul Hospital.  Just a note, every hospital offers their expertise; you need to make sure you get the best for each new experience, and for Samantha I made the right choice.  When we arrived in the ER, about eight people greeted us.  Ready to assist Samantha, the questions were coming from three different directions.  Imagine if you will a very large sterile room, eight people moving around, Blood drawn, and assessments made with me standing in one spot never taking my eye off Samantha answering every question posed to me.  It was the most beautiful dance I had ever seen, and I have been in ER’s all over St. Louis for Samantha’s entire life. Samantha was stabilized and we were soon in her room.  She made it very clear she was not happy with me and would not look at me.  I was willing to take the heat if it meant saving her life again.  Sense leaving Children’s Hospital, I have had a very difficult time with the doctors in the adult hospitals.  Yes, Samantha is an adult, but her body is that of a 12 year old so care can be tricky and if the doctor is not open to the idea that Samantha is a child, we have major collisions and Samantha is the one who ultimately suffers.  Here at De Paul Hospital we were so lucky to have a doctor who was a Hospitalist, that not only works with adults, he is proficient with children and their care.  Samantha had been assigned another doctor until he saw her stats on the board.  When he came in our room and introduced himself, he began to tell us what his plan was for her recovery.  Of course, tests needed to be done to confirm the plan, but he wasted no time.  By the second day, it was agreed that Samantha needed a g-tube placed for feeding.  With children who suffer Cystinosis, swallowing is effected and becomes debilitating and could lead to starvation or worse death by choking. I have to tell you this stay with this doctor was very comforting as if we were home at Children’s Hospital.  The next day therapy began and Samantha was a champion, working as hard as she could to get her body moving again.  It took three days to get her left side to start moving, simply amazing this child of mine, what perseverance, what an inspiration she is for me and everyone she touches.  “Home again, home again jiggery jog….”, Where therapy continued for three more weeks. 


Sept 16 Chapter 25

From WithIn by Therese Schroeter

March was the challenging month offering Samantha a variety of exercises, limited food options and a new walker.  April, Samantha was moving around the house like a mad dog enjoying what little freedom she had.  May, she was starting to fatigue when we were mobile and we decided to buy a cool metallic blue youth size transport chair.  June, we were back at it running around the mall taking advantage of some wonderful deals for her closet.  July, she was sleeping more and doing less outside of the house.  August 2, 2012 marked Samantha’s 25th birthday.  I never thought in my wildest dreams that she would live long enough to see her 25th birthday.  What a celebration this truly is for her and our family.  Shortly after her birthday, I decided to take a leave of absence from my job so that I could be with her.  I have Kathy who helps take care of Samantha when I work who is marvelous and caring.  My thought was, I was missing the rest of her life, and I did not want to any more, I wanted to be there to rejoice in every great moment she has and hold her through every bad one.  Sense her stroke in March she has experienced an increase in head pain, nausea and vomiting, low tolerance to the special formula, significant weight loss now at 68 lbs and very week.  For pain, I have tried every medicine out there and everything makes her sick and does not help with the pain.  Because the pain is not related to anything other than Cystinosis and the destructive path the crystals have taken, there is nothing that works for her.  Despite the trauma she was experiencing daily, one day two weeks ago, she got herself out of bed and wanted to go to dinner and shopping.  I could not believe it, and of course, I thought it would be too much for her, but who am I to say.   I decided to drive the car as close to the front door as I could so she would not have far to walk.  I have four steps from the door to the sidewalk so it was a bit tricky for me to get her to the car.  Wheel chair in the trunk, Samantha buckled in and we were on our way to the mall.  We had a great meal at the Cheese Factory, our favorite place, and then we shopped.  Mind you this day was not long as you would typically take your time eating and shopping, no it was more like, take a bite or two then wrap it up to go, hit about two stores then home we go feeling completely satisfied with Samantha falling asleep on our way home.  Because she was so tired it was a bigger job getting her into the house and into bed, mama was pooped.  It is September and all she wants to do is sleep so she does not have to feel anything.  I changed her formula, changed the intake to 12 hours instead of 30 minutes to help with tolerance; I went to my spice cabinet to fix homeopathic remedies for the nausea and vomiting, cinnamon is a wonderful remedy for nausea and honey for constipation.  Searching the internet for other homeopathic suggestions for comfort, I decided to look up another form of pain control that has only euphoric side effects.  I have contacted “Aunt Zelda’s Natural Edibles”, located in Walnut Creek, California where she offers an alternative to mainstream medicine.  I have asked specifically about Canna Oil, derived from medicinal cannabis, because the oil might be easy to administer and easier to digest. It has only been two days sense I wrote to them so I have not heard back yet.  I know in the state of Missouri this would be illegal but I feel I have no other choice in the matter, I am desperate.

Sept 16 Chapter 26

From WithIn by Therese Schroeter

 Samantha’s life has been a roller coaster ride to say the least that I would not wish on any child.  I know there are many diseases that are much more devastating to children perhaps, but it does not lessen the fact that Samantha has suffered her whole life.  With that said, I would not give away one moment I have had with her.  Unfortunately, for Samantha, the good days never outweighed the bad [I wish they would have].  Earlier this year Samantha had her Dad call his lawyer to have her last will and testament written.  She wants what she wants what she wants and there is no going around it, no matter what her dad or I may want.  She does not want a church service or to be laid out for people to stare at her.  She wants to be home, no hospital.  She wants to be cremated and her ashes given to her dad, her brother and myself with the exception of a small vile to be thrown in the ocean where my mom and dad are off the coast of Sea Side Oregon, so she can swim with the dolphins.  Cool I think, for someone so young to know exactly how she wants her celebration.  She wants a margarita party [her favorite drink], to be served with her pictures in a time line and her music in the background.  She loves Usher, R&B, and Country.  She had me put together a compilation CD of all her favorite songs.  She wants to be in a white dress simulating a wedding gown, pearls and a wedding ring.  She figures she has never been with a man so she will be a virgin bride.  I have pearls my mom gave me; she can wear the charm bracelet her father bought for her birthday and the diamond ring I gave her for her 25th birthday.  So now all I have to do is make her dress, I have the veil my sister sent a couple of weeks ago that I will design the dress around.  Perfect!  So now, comfort is the key, comfort it will be, for sweet Samantha Marie [a rhyme]. 

Sept 21 Chapter 27

From WithIn by Therese Schroeter


Mama’s Thoughts

I have decided it really is not the destination, but the journey that makes us who we are and what we will become, regardless of what challenge is placed in front of you.  It is how you master the recipe that matters the most, knowing you may not always have all of the ingredients.  I have made many mistakes along the way, but because of where I am and who I am today; I would have to say I would do them all over again, even though some mistakes have been very painful and have left their mark on my soul.  I love who I am, who I have become, and as far as I can see, I can only get better.  Both Jeremy and Samantha define how I have done in my life, regardless of the path they are on.  We as parents want the very best for our children, but in the end, we really have no control over their destiny only our own.  We can only hope that because of the paths we have been on, the wisdom we have gained will be passed on to them.  There is a catch however, no matter how hard we try to instill all we know it truly is that person’s willingness to absorb or not.  We can as parents only stand back and hope and pray that we have done the best job we could have done.  Jeremy’s has taken him to places I have only dreamed of going.  I am so proud of all of his accomplishments.  He has a beautiful wife, and two beautiful boys that will no doubt follow in their fathers successful footsteps.  I still have my journey, my path that I am still making.  I always knew the day would come when this disease would get the best of Samantha.  I thought if I was prepared it would be easier, how wrong I was in thinking that.  I am no more prepared than I was when we first found out she was sick.  I have taken care of her, her whole life.  I know that I will not falter when it is time for her to go, that is one job I know I will do well for her.  The question that burns in my mind and my heart is what am I going to do when she is gone.  When she is sleeping I sometimes walk around the house in its quiet peaceful state and try to imagine being alone.  I am not sure I can.  Every day that reality becomes more astute, as Samantha’s tiny body fades.

Oct 27  Chapter 29

From WithIn by Therese Schroeter

September 27, 2012
This week has been different from the rest. Samantha has slept for two days without any disturbance accept for me changing her diaper and feeding her via her g-tube. Lots of kisses on her bald head and tucking her in tight. I’ve been catching up on movies while I’m sitting with Samantha. The movie tonight is The Bucket List. And it got me thinking. Samantha had a list a before she got her second transplant when we thought she wouldn’t have long to live. We have done everything she had on her list accept one thing. She is in love with Usher. When he came to St. Louis, I took her to every concert he performed. The one thing on her list is to meet him. Of course, I know this would never happen, but I think it would be the icing on the cake for her. So I decided to make a list of my own. I don’t have anything on it yet, but I’m working on it. Maybe you should make one for yourself. Then write me back and tell me what it would be. Answer the question: What would you really want to do if you only had a short time to live? I wonder.

 Chapter 9

From WithIn by Therese Schroeter
Time Traveler
I am a soul traveling through time.  My journeys have led me here to this point, this hour.  Each time I have traveled, I teach lessons to those who desire the learning.  The wisdom I carry with me grows in each turn until I have full knowledge to share.  I fear not, for I have the light shining before me leading my footsteps each day.  My voice is weak now, so my words will be spoken through my writer.  The notes remembered, will be put on parchment to be read by many.  The song will be sung in grand gesture and loved by all who utter the tune.   Some have asked; if my journey has been fulfilled by now, and I say not as of yet, but it is nearing.  Unfinished work keeps me from moving on.  I am waiting for my last assignment, to hear word from my maker about the last lesson I will teach.  I am preparing for my departure by spreading my wealth among those who love me.  For where I go there will be no need for material joys.  I am preparing for my departure by settling my affairs.  For where I go there will be no need for settling.  I am preparing for my departure by loving my family unconditionally, so they will know all will be well.  My body is weak now, so my mother will carry me.  My mother will feed me until I hunger no more.  I will be covered from the cold by the arms of my mother.  She, will be my last lesson.  She, will be the one who will carry on where I have left off.  Touching those in need, laying her hands to heal the sick, holding the ones needing to be held, lending an ear for voices needing to speak.  Passing no judgment, she will overflow with love and joy.  When I leave, I will watch over her.  When I leave, I will continue to guide her so that she never falters with her quest.  When I leave, I will gently whisper love until her last hour.  Then I will meet her with open arms.  Then we will sit and talk about the times and celebrate the new.  We will have been souls, traveling through time.  There’s a place, where time stands still.  You don’t have to feel, pain anymore.  You can run away to yesterday, re-live that moment, day after day.  Just let go, let go of my hand, fall into my arms, let me hold you there, ‘till dawn creeps upon us.  Then we’ll run away, and never regret, standing in a place, where time stands still.

Oct 12 Chapter 32

From WithIn by Therese Schroeter

It was a simpler day when I was young.  I used to dream about what I would be and what I would do for the world.  I remember making speeches about doing good and feeling successful about the tasks.  I was a dreamer.  I started many projects, finishing them but not using them the way I should have.  Going to school degrees in hand and never seeking the job that might have led me to the next.  It seemed I always fell short of what I could have wanted.  Jeremy was my life that I failed at miserably.   If it were not for my mother and father letting us live with them after my divorce I don’t think I could have made it.  I think after looking back over the years I might have done an alright job raising Jeremy.  My goal was that he tried everything he wanted to try, from sports to travel, to expressing himself in special ways; I wanted him to have every opportunity and that he would be happy.  When he went into the army and served his tour in Iraq, he changed.  He moved away from me in every way possible.  Emotional, involvement, talking, visiting, I lost all contact with him.  I was devastated, I was lost without him, and there was nothing I could do or say to fix what was broken.    For years I tried to communicate, try to find out what I had done, what I could do to change the circumstances.  Nothing, absolutely nothing, so I finally gave up.  I stopped trying to fix whatever it was I had done.  I had a funeral for the relationship I so cherished with Jeremy.  I packed up all of his things and put them down in the basement in hopes that one day he may return.   Many years have passed and things are changing.    After Samantha’s stroke, Jeremy has been more involved with her; calling and visiting.  He even brought the boys over to see her one time.  I can’t tell you how great that felt.  It took everything I had not to pick those boys up, squeeze them, and kiss Jeremy.  I wanted to scream joy to the world.  Jeremy hasn’t come home, metaphorically speaking, but he is visiting and calling.  I am still quiet about how much I should involve myself; I am meeting him half way, kind of I guess, I think I am afraid I will make another mistake and not know it.  I think it’s a good start to a possible new beginning.  He is after all my heart, my love, my child whom I will cherish for the rest of my life.  Jeremy and Samantha are mending, she wants more, I think she’ll get it before she dies, no; I believe she’ll get more from him before she dies.  We both will.  Tomorrow is a new day.

Oct 16    Chapter 33

From WithIn by Therese Schroeter


This story I started writing was just as an outlet for me to come to terms with the fact that death this time, is inevitable for Samantha.  We are home and waiting.  I began my blog so I could read Samantha’s story repeatedly, as not forget each moment we have had together, the good the bad and the ugly. After all of the years of fighting for her life, it seems it’s at its end.  I have so many mixed feelings, that each day becomes closer to the end, I seem to be outwardly expressing every emotion.  I am exhausted from trying to show the world how strong I am.  If I hear one more person tell me how strong I have been through the years, I am going to scream.  Not strong at all, in fact, I’ve become a very good actress lately.  Putting on a good face for all who see me.  If I hear one more person tell me to pray for Samantha’s healing, that God will take her disease away and she will be well and live a long life, I promise, I will truly scream. 
Come on now, life with God does not always mean he will heal, if you think that, than you are not listening very clearly.  He said he would give strength, and not give us what we cannot handle, that he will be there every step of the way.  There is not one thing that happens in life that is left to chance or fate.  Everything happens for a reason, it is up to us to find the reason and work through it in trusting God will lead our footsteps to the best result.  His will is not always our will, which is the lesson we struggle through our entire lives.  I know what I want, but will it be what God has planned for my family and me or for Samantha.  Our lessons we are supposed to learn prepare us for entering his kingdom.   I have always believed that no matter what choices I make good or bad, I will learn from them, moving one-step closer to his glory.
After taking this leave of absence from work, I realize how difficult Samantha’s life has truly been for our family and the toll it has taken on us, especially Samantha.  Not that I never realized it before, I have always moved that realization to the back where I do not have to deal with it.  Now, here it is, staring its ugly face in mine.  The drug is strong now that keeps her comfortable and quiet for the most part.  Sitting near her watching her breath is how I spend most of my day.  My prayer has always been that she does not suffer.  My idea of suffering may not be God’s idea of what Samantha can overcome or I should say “willing” to overcome.   Throughout the years one way I have been able to “get things off my chest” so to speak, I have written songs to express my joy and sadness.  I play the songs often when I need to escape from the room where we stay.  This room has become smaller in the fact that the walls seem to be moving inward suffocating at times.  Sharing Samantha’s story with you I hope you not only have an understanding of Cystinosis, but to ensure you that if you are caring for a child or loved one who is chronically sick or dyeing, you are not alone in your journey.  I hope that you too will share your story some day.

Oct 17    Chapter 34

From WithIn by Therese Schroeter

It is getting more and more difficult each day for Samantha.  For the past two weeks, her intake has decreased due to constant dry heaving.  Nausea has become the enemy that I am having a hard time conquering.  Any medicine prescribed has stopped working.  The last recipe I tried worked for about a day.  It goes like this; 1-cup water, 10 drops of lime juice, 1/3 teaspoon of sugar, and ¾ teaspoon of baking soda.  Mixed together makes a nice remedy for the nausea.  I just wish it had lasted longer.  As much as I think I am doing a good job, today is one of those days that I cannot do enough to make her comfortable.  Last night she said she was not ready to die and of course, I agreed, I am not ready for her to die either.  Her temper is rough, she keeps apologizing, and I keep apologizing because I am having trouble helping her.  We are in a funk!  She is now on 10 micro grams an hour of morphine.  It’s helping but I’m afraid soon we’ll need to increase the dose.  Finally finding a drug that does not make her ill and works for her head pain is a relief.  I was supposed to go back to work November 5, I was able to get an extension until December 5.  The extra time will be great for the both of us.  I am missing work however; it was a great outlet for stress relief and money of course.  When Samantha sleeps, I’ve been cleaning out boxes and downsizing, it feels good to get rid of junk we do not need.  Someone else will be able to enjoy our junk!  My neighbor made a shadow box for each of her children with some precious keepsakes.  I liked the idea so much I have stared one for Samantha and Jeremy.  It is so fun to go through some of their baby things I saved.  Great memories.  Samantha decided the other day to give all of her clothes that were too big to my friend’s daughter.  Samantha has been a shop-a-holic, her favorite item to have are shoes, lots of shoes.  She is such a girl!  I love it.  One of the things Samantha really loves is baseball.  Sense we live in St. Louis Missouri, the Cardinal baseball team is the one she roots for.  Being that I am from California, I have always followed the San Francisco Giants.  We are having such a great time right now because both teams are in the running for the series this year.  As of today both teams are tied, one game determines the outcome.  This friendly rivalry gives her a spark and it’s perfect.  I have even posted on face book and I’ve been reading my friends responses to her, we both just laugh!  So for Samantha I’ll shout out Go Cards!  And for mama I’ll shout Go Giants!

Oct 18    Chapter 35

From WithIn by Therese Schroeter

I think from here on out I will post Samantha’s progress.  I have been trying per Samantha’s request to find out what happens in the end.  This subject is not only difficult for me to research, it is difficult for me to discuss with Samantha.  As her mother, my job is to protect her; she is after all my child.  She has a scientists mind and wants to know the facts, emotion set aside.  I on the other hand am an emotional investigator, reading stories about death and dying I become engulfed in the sadness of loss.   Trying to find a happy medium is the challenge for me right now.  While she sleeps I try to distract myself with the television, watching movies is what I love to do.  Lately all of the movies have been about loss of one kind or another, not all death and dying, but loss nevertheless.  Crying and overwhelming sadness seems to take the stage.  I think ridiculous; I cannot seem to get through a movie without falling apart.  Luckily, Samantha has been lying on her hearing ear so she can’t hear what a blubbering fool her mother is right now. 

Short change of subject, Samantha requested an addition to our family, “Ruby” the fighting fish.  I had objected to the idea of another mouth to feed and care for but she insisted.  So I bought a cool round bowl, added my marbles I have had from childhood, went to the local fish store to find a fish, and “Ruby” picked me.  Every time I walked by his bowl at the store he swam around joyfully when all of the others were docile.   So I brought him home, introduced him to Samantha, now they are both happy.  Ruby’s bowl sits on my desk where we can share time together.

Dear Diary-10/27/12

The past few days have become more difficult for Samantha with the nausea.  Nothing is making it stop and I am at a loss for ideas.  She asked this morning if it would ever be stopping, holding her exhausted body in my arms I could only reply, “I’m trying”.

Chapter 36

From WithIn by Therese Schroeter

Dear Diary- 11/05/12
This past week has been very trying for Samantha. We managed to get to labs this last week, which was a task in itself. We did find out that her sodium is low which could be one of the reasons why she is been nauseated. So, every day she gets 1/8 of a teaspoon diluted in some warm water, which I give to her first thing in the morning. It’s been a week now and it seems to have helped alleviate most of the nausea. I purchased a juicer, and have juiced fruits and vegetables for Samantha. I’m rather excited about the idea of the juicer, I’m still learning, but I’m very excited about the outcome. I think Samantha is getting frustrated because she feels so lousy and can’t quite seem to get a handle on it. It’s equally frustrating for me because I can’t help her overcome this struggle. Today is Monday the fifth, I should have gone back to work today, however they are letting me stay 30 more days at home. I’m not really certain if I am going to go back to work on December 5, every time I think about going back to work and leaving Samantha my stomach starts to hurt. I know I shouldn’t worry but I do nevertheless. Kathy Samantha’s caregiver has gone back to school, and part of my worry is that she will be here for 10 hours a day and may not be able to handle the stress of working and school. I’m sure going back to work would be a good thing for me, however; I just don’t know how I am going to be able to work all day and to be up all night taking care of Samantha. I’m completely exhausted from the constant care, so I believe this is going to take a great deal of thought in order for me to make it happen successfully.

Samantha has wanted to go to the fish store to get a new tank for Ruby and a live plant for her to hide around. It’s so cold and rainy and very difficult to transport Samantha when she so weak, this has been upsetting her not being able to get out and go do it she wants. To compromise I went to the store tonight and purchased a larger tank for her fish, which is a Betta. She seems to be acclimating very nicely to her new surroundings. Tomorrow is Election Day and Samantha has voted online, she wants her vote to count. Kathy will be coming tomorrow after she votes and then I’ll go and vote for president of the United States. I’m not going to disclose who I am voting for as of yet, I would prefer to wait after the election so as not to have to involve myself in any political conversation. I’ve been debating whether I should go through all of my Christmas decorations, organize them to prepare for Christmas decorating. I love decorating for Christmas it is one of the most favorite things on my list of things to do. It’s one of those things I wish it were Christmas all year round. The warmth of the lights, the smell of the Pine, and the seemingly cheery disposition everyone around you is in. I have a couple of weeks to decide yay or nay.

Chapter 38

From WithIn by Therese Schroeter

Dear Diary- 11/09/12

The last three days have been very difficult for Samantha, I just found out the reason why she has been constipated to the point where she is in excruciating pain. She is on morphine patches for pain management and apparently, when you are on a morphine patch you become constipated. So now, I am giving her another medicine to combat the constipation and try making her regular. I feel so badly that the solutions are taking so long to resolve the problems. We have an appointment on Tuesday at the doctor’s office to pick up another script for the morphine patch. Unfortunately, the only way to get another script is to go into the doctor’s office physically so that they can chart that they have seen the patient so they can write the script. The trip is about an hour from our house and as I am sure I have said before it is so difficult to get her just into the car let alone into the wheelchair and into the doctor’s office and then back in the car and then home. I am hoping at this visit we will be able to set up other arrangements so that I will not have to transport Samantha to the doctor’s office or to get labs or anything else for that matter.

I have decided to decorate the bedroom for Christmas, since this is where Samantha spends 100% of her time, this way she can enjoy the decorations. The last two days I have spent my time cleaning the house, while Kathy has been taking care of Samantha. I am now ready to start decorating; of course it’s early we are not yet at Thanksgiving. But that’s okay, time is no problem here, I just want her to be able to enjoy the Christmas season. I’m going to keep it simple so that she can see as much as possible. Garland and lights, red and white bulbs and silver ribbon will adorn our house. After Thanksgiving, I will put the wreath on the door.

I sent my letter to my work today asking for an additional 30 days. I think I may as well stay until the first of the year that way Samantha and I can spend time together enjoying the holidays. I hope that they will accept my request and I can relax again. I hope, I hope, I hope.

Chapter 39

From WithIn by Therese Schroeter

Dear Diary- 11/13/12

     I just wanted to give you an update on Samantha. I managed to get her to the doctor's office today to refill her morphine. Kathy was able to go with me to help get Samantha in and out of the car and in and out of the wheelchair. Of course getting her ready to go anywhere as I’ve said before is a huge ordeal. Getting her dressed is so difficult when her body is so limp and sleepy, and because her body has lost so much muscle tone, the ability to walk is gone, even standing is impossible without holding her up. So getting her to the car I have to carry her, going down the steps is not so bad, it makes Kathy more nervous than it is difficult. But getting her out of the car and back up the stairs, now that’s a whole different ballgame. Tonight I actually had to take one-step and put her feet on the next step so that I can step up, then I picked her up again and put her feet on the next step so that I could step up and then I picked her up again to carry her to her bed. By the time I got her into bed, I was exhausted; this old gal just ain’t got it anymore.
I set it up with the doc so that I will not have to take her out to his office anymore, I will be calling home healthcare services this week to give us assistance for the rest of her care. We will be increasing her morphine patch by Friday; she is on 10 micro grams per hour right now and I will be increasing the dose to 20 micro grams per hour. The pain in her head is just too much for her to deal with anymore and she just wants to sleep. She's such a
tough girl, but she's tired, tired of dealing with the pain. You know it's interesting how I have prepared myself her entire life for this time, but I'm finding I'm not prepared at all. Of course taking care of her daily is something I love to do, it's just becoming harder, sometimes I think I might not be making the right decisions, actually I don't want to make the decisions, making them at this point they become final. Of course, before I make any decision I weigh everything out and talk to her so that she knows she still has control. I think with this next level of morphine she may not be able to help me make those decisions. 
I’ve had a feeling this past month that Samantha’s passing is closer. Closer in the sense of weeks not months, it doesn’t feel like she will be here for Christmas. I said a prayer tonight, that God takes her, that he takes her soon. My Christmas wish is that Samantha can run around, play, see everything and hear everything, joyously celebrating existence. I have called on my mother and my father, my sister and my nephew and all of the animals that have passed away whom we have cared for over the years to be at the ready, greeting her and welcoming her home. Tonight I think for the first time I feel at ease, ready to send her to her next great adventure.

Chapter 40

From WithIn by Therese Schroeter

Dear Diary- 11/16/12
The past two days of been fairly decent for Samantha, this morning about 1 AM she woke up and decided she would like to try some tea and toast, English breakfast I call that. So, I made some hot tea and toast, she took a couple of bites and a couple of sips of her tea and decided she was done. Kathy was here today, she cooked all day, meatloaf and Chile made the house smell good all day. After I dragged my body out of bed today, I went to have my mammogram done which Samantha has been bugging me to do with the past few years. I know I know I should have had it done years ago but I guess it was just one of those things I put off. Her request was that when I was done what I please go through white castle and bring her home a burger. Bill came over this afternoon and spent some time with Samantha, she enjoyed a bite or two of White Castle burger. After she was done with her two bites, I moved her chair toward her fish tank where Ruthie once lived but now Dorothy occupies her space. Bill help Samantha put her finger to the tank so that Dorothy would follow her finger across the front of the tank; it put a smile on Samantha’s face. Those are the moments worth cherishing! While Samantha was sitting in her chair, she shared a dream she had last night. She said she was a fish swimming around, kind of like a “Nemo”. She said as she was swimming around she suddenly swam out of her body, and as she kept swimming she could see her body behind her. I knew right away, what her dream was about, the perfect expression, it fits Samantha to a T. Samantha loves the sea, she loves the Dolphins, and she wants her ashes in the sea, so it is fitting that she would dream about her parting this earth as a fish leaving her body swimming free. Bill, Kathy and I did not respond in any particular way to Samantha’s story except by acknowledging her. When Samantha fell asleep, Bill asked what I thought the dream meant, and I told him that I thought it was about her dying. I have been having some dreams also, mine have been about spiders. I have asked Kathy to look the meaning up in the dream dictionary. It seems the meaning has a couple of definitions; one of course has to do a spider webs, being tangled or caught in or held in by something. When I see the spiders, I am in between my sleeping and awake moments. The other night I dreamed about a green spider made out of fuzzy green pipe cleaners, crawling on the wall. Apparently, that particular dream meant that I was being directed or controlled by a female and that I was out of balance. Hummm. I am sure we could all speculate the story behind that dream. It should be interesting tomorrow morning to see if Samantha and I have had any interesting dreams. I’ll be sure to share them with you!

Chapter 41

From WithIn by Therese Schroeter

Dear Diary- 11/21/12
Well this week I did all of the footwork to get hospice started officially. Seems that because Samantha has Cystinosis she does not fit into the system. Because Cystinosis is an orphan disease she doesn’t qualify for even some of the basic essentials needed for dying. I talk to five different people today, each one gave me a new number to call, a different company. Each one saying the same thing, were sorry we cannot help you, were not familiar with Cystinosis, we do not know how to process her disease. I was not surprised at all because her entire life with Cystinosis has never fit into the proper cog, therefore I am very familiar with the doors being shut. The last company I spoke with was an actual hospice company and an appointment was made for Friday. They contacted Samantha’s Dr. and Samantha’s Dr. contacted me to confirm the next step. After having our conversation tonight I decided not to go with the company I spoke with, I will be going with the company the Dr. would like to use. They feel confident that this company will take great care when it comes to Samantha’s needs.
One thing I have learned in dealing with the medical world is that it is a very prejudice world. It all comes down to the insurance companies, rules and regulations that are set up to protect the insurance company, and not the patient. The doctor’s hands are tied which makes their job 1000 times more difficult to do. Samantha is very lucky to have a Dr. who loves her and cares about her welfare. I am fortunate to have a gold mine in him and his staff, which after 20 years has become like family. Now that all of the ducks are in a row the next step is for me to get my head in the game, set as much emotion aside so that I can make the right decisions for Samantha. I can sure talk the talk; however, that tiny bit of doubt in the back of my mind is wondering will I be able to walk the walk. I think I’m brave, I think I’m strong, I know my heart is full of compassion and only wanting peace for Samantha. I have been in control her entire life, these last few months being home with Samantha has allowed me to be in full control. Knowing that someone new is going to come into our home, needing to change the game in order to give Samantha the relief she desires is probably going to be the most difficult hurdle for me to get around. I’m not a control freak, I just know what Samantha wants and what I need to have happen for her.
Tomorrow is Thanksgiving and I am truly thankful for every day I have had the privilege of sharing Samantha’s life. I am thankful for both of my children; I’m the luckiest mom in the world. I won’t be doing any cooking tomorrow nor will I be doing any traveling, however I will have my best friend Lynda bring me over a Thanksgiving plate to feast on. Samantha’s father will be bringing a plate also, guess it’s not going to be a day to be on a diet! May be with all of the wonderful smells coming into the house from which I’m sure will be the most delicious food, Samantha might want to take a bite or two, here’s wishing!

Chapter 42

From WithIn by Therese Schroeter

Dear Diary- 11/24/12
Well Thanksgiving was not what I had hoped it would be for Samantha. She has been nauseated and dry heaving since I posted last on 21st of November. Bill brought over enough Thanksgiving feast to last a week, which I enjoyed tremendously. Later that evening Lynda came by with the lovely montage of food from her Thanksgiving feast. I think I will be set for a while now and won’t have to cook. I have tried everything I have looked up to stop nausea and nothing is working. This last 24 hours has been the worst so far for Samantha. Not only is Samantha completely miserable but I am left feeling helpless. All of the things that I have tried that have worked before no longer are effective in this battle. The morphine patch now at 20 micro grams seems to be doing the trick for combating the pain in her head. Now as I see it, we have traded one monster for another, nasty disease this Cystinosis. I am making one last ditch effort this morning by giving Samantha Benadryl. As I was searching the web this morning, hoping to find something I came across an article that said Benadryl assisted in relieving nausea. So now, all I can do is to wait and see.
Some of the things I have tried so far in combating nausea, is; chicken broth, 7-Up, cinnamon, I even went as far as putting cinnamon in a pot of water so that the aroma would move through the house hoping for some calming effect, baking soda and line mixed in water, and finally the Benadryl. Some of the antidotes to relieving nausea I cannot use because Samantha can no longer take anything orally, everything I give her must be crushed and put through her G-tube. Initially I thought the G-tube was going to be a hindrance to her care and I am finding that it has become a blessing. Because the swallowing mechanism is not working and she is pooling saliva in her throat not being able to swallow, it at least allows me the opportunity to try to give her some nutrients.

Last week I had set up a meeting for Friday with hospice and decided to go with a different company, one that Samantha’s doctor likes. Monday I hope to hear from them, I need that second opinion now to make sure I am doing everything I can for Samantha. Waiting is always the hardest thing to do, immediate results is what I want. I always thought that the thought of losing somebody was devastating, and I have to say watching your loved one suffer is by far the worst experience ever. Now I understand all of the stories that we hear about when a loved one assists their loved one in death so that they do not suffer. I was always one of those that said, “That’s not right”, now my feelings on the subject have flipped completely. Even though I understand how and why someone would help his or her loved ones die, this is something, I would never be able to do. I believe strongly that God is in control, and that creating life and death are part of the grander scheme. Once again, I am on my knees praying that God takes her now.  There is nothing more she needs to learn in her lifetime, she has suffered enough, she’s tired, I want him to let her go with him now.

Chapter 43

From WithIn by Therese Schroeter

Dear Diary- 11/26/12
This morning I called the doctor to see what the status was on hospice coming in today, they had just sent over the paperwork at 9 o’clock to the hospice office and by 12 o’clock they were sitting in my living room going over the current needs for Samantha. A social worker and the nurse walked me through the entire process, we  went over Samantha’s meds and changed a few of them. Come to find out there are several meds that I was not aware of that Samantha will be able to utilize to help with nausea, the buildup of saliva in her throat, her head pain and comfort. I have to say I’m ecstatic about this new find and furious at the same time. All of this time I’ve been begging the doctors to help Samantha with these issues. What I don’t understand is why didn't they offer these drugs, these solutions to these devastating issues that she’s been dealing with over the past year and clearly over the past few months. Are these the drugs only offered to a patient when they have entered hospice? My instant reaction is to send a letter to each and every one of the doctors to let them know what drugs are being offered to Samantha and ask them if they knew about them and why didn't they offer them to her. Not that it will matter now, but it will certainly give me the piece of mind knowing that maybe the next person that comes along with these issues they’ll be able to offer them to those people. Sounding a little bitter am I? Absolutely, without any apology! Tomorrow is going to be a big day, because we have changed companies the bed and the pump and her suction machine will be exchanged for their equipment. A bit of a hassle but needs to be done. I do feel a sense of ease however because of the fact I can now have some relief for her. Knowing now Samantha's passing will be easier.
Today grandma and grandpa, dad and brother came by to see Samantha upon her request. She knows that the time is getting closer and wanted them to come sit with her today. I think now they all know that time is precious, it’s too bad though they didn't realize this years ago. I am happy for her that they were all able to come by and will be returning the middle of the week. Upon Samantha's request, I ordered all of the Christmas presents for the children in the family and they have been arriving daily. It’s 11:04 PM and Samantha is sleeping quietly. I have closed up the house, put the dogs to bed, and have taken a minute for myself to have a cup of coffee before I go to bed. I have no idea why, coffee should be a stimulant to keep you awake, but for me in the evening it helps me sleep. Crazy, I know!

Chapter 44

From WithIn by Therese Schroeter

Dear Diary- 12/5/12

One of God’s angels here on earth just got her wings.

Samantha Marie Schnettgoecke passed away on Monday December 3, 2012 at the young age of 25.
Although her life had many hurdles and challenges, she always kept a positive eye on the horizon. All whose lives she touched were inspired by her strength, her courage, her perseverance, and the love that she had for everyone including animals. Samantha was not only inspirational, but she taught us what the importance of life was all about.

Samantha’s family would like to take this time to thank everyone for your prayers, support, and encouragement throughout the years.
Samantha is survived by her mother, Therese Schroeter, father, William Schnettgoecke Jr., her brother, Jeremy Lee and her many relatives. Samantha was a beloved Daughter, Sister, Granddaughter, Aunt, Niece, Cousin and dear friend to many and will be missed dearly.

A memorial celebration will take place on Monday, December 10, 2012 from 4:30pm until 9pm at Vincenzo's Italian Restaurant: 242 South Florissant Rd. Ferguson, 63135. In lieu of flowers, memorial donations can be made in Samantha's honor to the St. Louis Zoo Foundation: PO Box 790290 St. Louis, 63179.

Chapter 45

From WithIn by Therese Schroeter

Dear Diary- 12/8/12
Throughout Samantha’s entire life, I had always prepared myself for her death. Of course, now it goes without saying there is no preparation for death, nor is there preparation for life. I do think however no matter what the journey is that your loved one or yourself for that matter is going through you need to decide if you will participate or not participate, concerning life there really is no sitting on the fence. By staying neutral, thinking that this position will keep you from harm or getting hurt will only be cheating yourself in the long run, cheating your loved one as well. It’s only been a couple of days since Samantha has passed away and I find myself going over and over every trial, every situation, every struggle to see if there might have been something I could’ve done differently. Not that it matters now, and I couldn’t begin to tell you why I’m even thinking about it except for the fact she’s not here. I’m always saying don’t have “I wish I would have’s”, because life truly is too short not to give everything your best effort.
Samantha passed away December 3, 2012 at 9:45 AM. Her dad had spent the last few nights over as not to miss any time that she had left, and I’m really glad that he did. That morning I had just given Samantha a rub down with some wonderful oils and changed her pajamas, snuggled her back into bed, although she was in a very deep sleep I have to believe that it made a difference for her. Her dad had just brought in a cup of coffee for himself and for me, he sat on one side of Samantha and I sat on the other, and at the same time, we each took her hand as Samantha took her last breath. Feeling so burdened for Samantha these past three months that she was in devastating pain, I felt a sense of relief and my first thought was as I watched her take her last breath was that she was finally pain-free. The last two weeks of her life, I prayed and prayed that God take her, this was no life for her just lying in bed controlled by the morphine that was so heavily running through her body. Jeremy had arrived just moments after Samantha had taken her last breath and I could see on his face that he wished he had been here just moments earlier to be with her. However, I know in my heart Samantha knew that Jeremy had been here these past few weeks holding her hand, telling her that he loved her and that it was okay to go, it was okay to leave, because she had so much more waiting for her and so many people eager to greet her.
Samantha’s wish was to remain at home and to be dressed in her wedding dress. Samantha looked beautiful; Jeremy, Bill and I spent the first hour with her before Lynda arrived to help me prepare Samantha for the family. As the day unfolded, family and friends came to mourn her passing and share in our grief. Each time we came into the room with another family member Bill, Jeremy and I noticed Samantha’s face soften, her lips formed a sweet smile and her head gently leaned to one side. So many people that have been to viewings, said repeatedly that they had never seen anyone look as soft and sweet as Samantha did. My guess is typically when a body has not been prepared for a viewing the body can become distorted and unpleasant looking, most definitely this did not happen with Samantha. I believe that it was our sign that she was truly in peace.
This week has been extremely difficult for me to readjust emotionally and physically. Samantha had been so organized in the orchestration of her dying by purging her belongings, deciding who was going to get what, that when Jeremy and I went through her things there really wasn’t much for us to take care of. She was most definitely an amazing woman, strong and courageous, a hero in my eyes. She also wanted to have a party in her honor, which we will hold on Monday. This truly will be a celebration in her honor. Bill, Jeremy and I along with Jeremy’s wife Erin have been working diligently to make every detail perfect. I am truly amazed how effortlessly this entire process has been. I didn’t realize how much work there is, how much business there is with dying. Samantha chose to be cremated, they took her body Monday evening around six in the evening and she arrived back home escorted by her father Friday afternoon where Jeremy and I greeted her.
Lynda took me shopping today to buy a dress because I don’t really have any nice things to wear, being is that I had a uniform for work and when I came home I would jump into my sweat suits, and I wanted to look special for Samantha’s party. Needless to say, I feel badly for Lynda because it was very difficult for me to shop for this occasion. I did manage to get through it, hopefully Lynda was unscathed by the experience. Tomorrow is Sunday and I think I’m going to stay in my pajamas all day. I may even watch movies; I’ll just let the day unfold.

Chapter 46

From WithIn by Therese Schroeter

Dear Diary- 12/11/12
Last night we held Samantha’s Memorial party. The Lenero family was so gracious in allowing us to use their restaurant for Samantha’s celebration. Erin did a fantastic job creating an atmosphere that Samantha would have loved. More than 250 people greeted, hugged, cried, and shared memories with Bill, myself, and Jeremy. I cannot express enough how grateful I am for the joy that was shared last night.
Over these past five months, creating this blog for Samantha has been an effortless task that I wish I did not have to end. This was Samantha’s idea to create this journal and I am so glad that I was able to do this for her. I am extending a heartfelt thank you to all of those who have read her life’s journey and to those who have shared her life’s journey. God bless.

Chapter 47

From WithIn by Therese Schroeter

Dear Diary- 12/13/12
It has been a week and three days since Samantha has left me here on earth. I stepped outside tonight with the dogs and my cup of coffee. I looked up into the sky and saw the first star and I said: “starlight star bright first star I see tonight wish I may wish I might have this wish I wish tonight”. Of course, the old saying is that you do not tell your wish or it will not come true, however; I know this wish will come true so I am not afraid to tell it. My wish was for Samantha to have peace. After saying my wish I asked Samantha to let me know that she was there and that she heard me and that I love her with all my heart and that I would love her 1000 times, that my love would shower her daily forever and ever. Just as I spoke the last word a shooting star moved across the sky and I knew it was her, I knew it was my sweet girl Samantha. A smile came across my face that even now I am beaming with gladness and joy.
As soon as Samantha’s celebration had passed, Tuesday morning came, and along with Tuesday morning a fever and illness has struck my body. Lynda says its caregiver’s illness, those that take care of someone and never have time to get sick, when that task is over then you do get sick. Well, it sucks to say the least and I need it to be over so that I can start getting on with my day. I have Christmas cards to fill out, thank you cards to write, and gifts to wrap. So, hot toddy help me tonight!

Chapter 48

From WithIn by Therese Schroeter

Dear Diary- 12/19/12

            This will be my last entry for Samantha’s journey. In lieu of flowers, for Samantha’s passing Jeremy came up with the most wonderful idea to honor Samantha. He said we should get a brick or a bench at the zoo, which would be something she would have thought of most definitely. The trickle of cards and gifts has come to a stop and it is time to read through them once again. Beautiful and caring words have adorned each and every card and note that we received, and my heart has been touched. Sending out thank you cards seem so trivial in comparison to all of the love that we have been shown.
            This year is coming to an end and a new year will start bringing each of us new roads for us to travel. We each have our own journey, destination, or path to glory. For me, I think mine has just begun, a new journey, filled with exciting outcomes. I have to say I’m a little scared because I feel my past has always had a purpose, taking care of Jeremy and Samantha. Of course, Jeremy is grown with children of his own that I hope to share many moments with in the years to come. And I know that Samantha is busy being a Guardian Angel. So what does lie ahead for me? What will this new purpose be? I guess only tomorrow knows exactly what will be in store for me. I guess tomorrow will bring the challenges I need to keep me strong. I guess tomorrow will be the day that I remember to continue to thank God for. One thing I am sure of, tomorrow will remind me that Samantha’s life here on earth was filled with unbelievable challenges. And with those challenges she never faltered, she never veered from her path, always, always showing love and generosity. I can only hope that I can live up to her legacy and continue where she left off, although how I feel right now this very moment those are pretty big shoes to fill.

            I would like to thank you for the opportunity to share Samantha’s story through my eyes and my heart. God bless each and every one of you.