Shelby gave her Aplastic Anemia testimony (9-18-15) at the coffee house gathering held monthly at The Little White Church in Hill City. A nice crowd came together, filtering in as Shelby spoke. Here it is, though lengthy...
My Testimony
- I’ll start off with my early childhood:
- When I was very young I was diagnosed with PDD (Pervasive
Developmental Disorder)…also referred to as a mild form of autism.
- My single mom tried hard to meet the challenges that came
with me.
- When I was a toddler she began letting me stay with my
grandparents once in a while for a week or two, and they lived about 450 miles
away at that time.
- It was a fun adventure for me, and it gave my mom some
time to regroup.
- Then each summer I would visit my grandparents for a few
weeks, once they moved to Hill City to start their "retirement"
business, and I was always so happy to be back in Hill City.
- And the first year I moved up here is when Hill City had
their first soccer team, and of course, I wanted to play…
- So my grandpa
wanted me to have health insurance in case I got hurt. He did all the research
and couldn’t find insurance for me, but finally went to SD Medicaid. And so, I
played my first year of soccer…no injuries. ☺
- I started to feel very tired…I would sleep for hours when
I got back from school and slept in late on weekends, and my grandparents
thought it was probably because I’m a teenager and needed extra sleep.
- I noticed, and so did my grandparents, that I was starting
to get very pale.
- Then I started having big black and blue dark colored
bruises on my legs.
- Then petechia first started showing up on my legs.
Petechia are little red spots on the skin as a result of internal bleeding.
- And my grandparents thought that it was from wearing tight
pants/leggings…but then it started showing up on my arms and face.
- But one night, somehow my ankle got cut and it started to
bleed, but it wasn’t normal, it was clear…the blood was very, very watery.
- That’s when we knew it was time to visit Dr. Graber.
- We got an appointment the next day to visit him after
school.
- I started doing research on the symptoms I was having…The
first thing that came up was Leukemia.
- I was in a bit of shock thinking, how could this happen to
me? And again I thought, is this REALLY happening to me?
- When I arrived at the clinic, they started doing tests,
getting my blood mostly…
- After all the testing was done, we went home.
- The next morning, I was walking out the door to go to
school, and that’s when we got a call from Dr. Graber saying to take me to the
Custer emergency room, and the ambulance would take me to the Custer Airport
where the Sanford Childern’s Hospital plane would pick me up.
- We were all in shock. On the way to Custer, Grandma said a
verse to me to help me with my fear, Jeremiah 29:11 – “For I know the plans I
have for you,” declares the Lord, “plans to prosper you and not to harm you,
plans to give you hope and a future.”
- When we got there, we met with a doctor right away, Dr.
Barbour, and he told me what I might have. He said, possibly Very Severe
Aplastic Anemia or Leukemia.
- They did a lot of blood tests.
- After a few days of testing, they told me I had Very
Severe Aplastic Anemia.
- At first I was very happy that it wasn’t cancer! But then
I found out how serious it is to have Very Severe Aplastic Anemia (only happens
in one in a million people, rare).
- For all of you who don’t know, Very Severe Aplastic Anemia
is a bone marrow disorder. The bone marrow doesn’t make any red blood cells,
platelets and white blood cells.
- They told me that I would be getting some immune
suppressant medicine in hopes it would re-boot my bone marrow.
- The medicine was called Cyclosporine, and it could be from
a horse or a rabbit, and I got a horse…and my mane really grew long…and my eye
brows…and my un-wanted mustache, and my face got fat from all the steroids I
had to take, and then I also broke out in hives from the blood transfusions, so
I had to take Benadryl, which I didn’t really mind much, because I liked
sleeping. Hehe
- They treated me for several months, my mom drove me back
and forth across the state just about every week for treatment and check
ups...6 hours each way.
- The immune suppressant treatment wasn’t working well for
me, so the doctor started the process of trying to find a bone marrow donor.
- This bone marrow transplant would be done at the
Children’s Amplatz Hospital, Minneapolis, MN.
- The donor turned out to be a wonderful 55 year old woman,
who had to have extensive testing to make sure there was nothing wrong with her
so she could go through the marrow donation okay. She was 100% match for me.
- We hope that one day we will get to meet her and tell her
how she helped save my life.
- There was one major life threatening complication in the
Sanford Children’s Hospital.
- Because of the vast number of transfusions and tests, it
was necessary for me to have a PICC line to have access to my vein (Explain
PICC line…)
- This caused a serious blood clot all the way up my arm and
into my clavicle that had to have surgery to remove it, and if they hadn’t
gotten it in time, I probably would have died from the blood clot going into my
heart.
- Now on to Minneapolis, MN!
- The move on to Minneapolis, MN took us to the Amplatz
Children’s Hospital, 5th floor with my mom.
- Preparation for the transplant required a total
elimination (by chemotherapy and full body radiation) of what little bone
marrow and immunity that I had.
- The chemo and radiation had their painful side effects
which struck me mostly after the transplant. I lost all my hair and much of my
weight.
- The day came for my transplant. The marrow was picked up
in Europe, flown back here and hand carried by courier.
- An exciting yet apprehensive time for me because they had
to tell me that the bone marrow transfusion, much like a simple blood
transfusion, could kill me.
- That first day is called day 0, and that’s like the day a
baby is born and will need immune shots and need to be protected.
- I was doing so well that at the end of Christmas time, my
mom and sister turned the care back over to Grandma and Grandpa and they
started their long drive back to FL.
- At the end of 100 days, if I was doing good, I could go
home.
- Day 96, I started running a fever. Tests said that the
Epstein-Barr virus in me had attacked my B-cells and changed into lymphoma (but
that word was not directly used, but it was called PTLD, Post Transplant
Lymphoproliferative Disorder).
- They took out 2 lymph nodes in my neck to confirm it was
PTLD.
- They treated me with more chemo and steroids but said they
could not cure me, though the treatments did kill many of the PTLD cells which
had caused lesions in my bone marrow, spinal fluid, brain, liver and on many of
my vital organs.
- It was at this time I began to bleed in the back of my
nose, in the adenoids, and passing
blood.
- So much blood that they had to search out the cause.
- It was these scabs at the back of my nose that were
bothered by food, drink and medications which caused them to bleed.
- Grandpa said he watched me throw up blood, then reach into
the back of my throat and pull out clots 3 to 6 inches long. He saw me do this
5 or 6 times.
- Then I would take Harry the pole with me and go back to
sleep (Explain Harry the pole…)
- The doctors were trying to figure out why I was bleeding
so much and they couldn’t stop it.
- Tests came back that it was Von Willebrand Factor.
- The protein (glue) on the blood platelets was missing, so
my blood could not coagulate easily, even though I was beginning to make my own
platelets.
- They took me to surgery, scoped my nose and found a large
clot on my adenoids.
- They also put a camera in my stomach and found 2 lesions
at the mouth of my small intestine that were bleeding.
- The doctor told my grandpa that she had to call in another
surgeon from another hospital to help her staple off the bleeding.
- It was a long surgery and I was very grateful for the
prayers.
- Out of the surgery and awake, I had found they had sprayed
foam in both sides of my nose.
- When they cauterized my adenoids, they said the procedure
could have caused me to go blind, since they were so close to the optic nerve.
- They had also told me, when they took out the lymph nodes
in my neck, if they nicked a nerve which lay up against the lymph nodes they
would remove, my jaw could become partially paralyzed.
- And it was, to some degree, for a couple of weeks. My
smile looked like I had a stroke.
- With the diagnosis of Von Willebrand it meant no eating or
drinking because the surgeries had to heal, and any liquid could wash off a
newly forming clot and food could drag a clot off.
- My packed nose hurt and it was so hard to have to breathe
through my mouth for weeks.
- Do you know what it is like not being able to drink water
for weeks? And having your mouth so dry from having to breathe through it? I
do. Once, I asked Grandma to ask the
nurse standing by my bed to pray for my nose. The nurse said she would. The
next morning, half of my nose could breathe.
- I was very miserable not drinking water, couldn’t stand
it! and this distressed my grandma and grandpa. Grandma finally asked them if
they would let me swish water in my mouth.
- They said okay, as long as I didn’t swallow any.
- Once when the doctor was in the room I was swishing and
had gotten to my last little bit of water…I swished it, then swallowed it. The
doctor was looking right at me, and I gave her a guilty smile, and everyone
laughed.
- Finally the packing in my nose began to dissolve out, and
bleeding began to come under control because of medications for the Von
Willebrand Factor, but this was not a permanent fix.
- In the meantime, children were dying around me. My mom,
Grandma and Grandpa got to know some of the parents, and it was very hard to
hear of a child dying.
- There would come a point of no return where the child’s
hope for any quality of life was gone, and one surgical procedure would lead to
another and another, trying to fix the side effects of the procedures and
medications, and this would continue with terrible pain for the child, until
death.
- One night Grandpa stayed with me in the hospital and
Grandma tried to get some rest in our RMcD room. She told me later that she
couldn’t sleep and was in fear that I was right at that place where I might
lose my quality of life forever and suffer worse and worse things until I die.
- She pleaded with God, and then sensed that God reminded
her that He is merciful and she could ask for mercy. She knew we aren’t any
better than anybody else, but she could ask God for mercy. She did.
- Not knowing if that meant I would die suddenly or that I
would be healed.
- The next morning she came to me and said with lots of
tears, “If Jesus comes knocking on your door and you are tired of this, feel
free to go to Him. Don’t worry about me. I will miss you until the day I die,
but you are the one who is suffering. Don’t feel that you have to stick around
here for me.”
I was relieved.
- That same day, the doctors had a conference with my mom,
Grandma and Grandpa, and they told them that nothing more could be done for me
that they hadn’t already done.
- And that is when they said the CANCER word, not just
PTLD. But then, the main doctor in the
conference room - as if a lightbulb came on - shared with mom, Grandma and
Grandpa that there was a trial study treatment going on in Memorial Sloan
Kettering in NYC, and that it could possibly provide me a cure for the cancer.
- Many things had to happen, such as being accepted into the
trial study, and finding transportation from Minneapolis to NYC.
- Mom, Grandma and Grandpa decided not to tell me of the
trial treatment until they knew it would happen, because they didn’t want me to
have false hope.
- Then the doctors came into my room one of those next few
evenings and told me that the transplant had cured me of Very Severe Aplastic
Anemia, and that they could not even find it in my DNA.
- Then they told me the bad news, that I had cancer.
- “You mean I am cured of Aplastic Anemia?” “Yes.” “But now
I have cancer?” “Yes.”
- Once I understood I had cancer, I broke down and cried.
- Then, since everything had come together enough for them
to feel it was time to tell me, they told me about the trial study at Memorial
Sloan Kettering.
- When they left the room, I was a little mad at Mom,
Grandma and Grandpa for not telling me sooner, but they explained that they
didn’t want to give me false hope.
- But for me, that last few days, before I was told about
Memorial Sloan Kettering, had been really hard (…like having the spinal tap
when they looked for PTLD in my spinal cord, that led to a lengthy bleeding
episode, that started the search for a cause, and led to Von Willebrand). And I
was very down and discouraged by then, and didn’t have any more energy to go
on.
- Grandma wanted to encourage me, even though she couldn’t
say anything about the trial study, so instead she read comments that people
had written below a post she had made on my facebook page, Shelby’s Journey with Very Severe Aplastic Anemia.
- She didn’t tell me that the post was about the trial
study. She just read people’s comments, encouraging me, praying for me. A lot
of comments. Halfway through the comments, I told Grandma that I wanted to get
up.
- She thought it was to use the bathroom. But, no, I wanted
to sit in the chair. I sat for a few minutes, then I wanted to walk to a room
that had a bean bag in it, so I could sit in the bean bag. We walked there and
found out it was closed for the weekend.
- So, we walked some more until we found a small empty
conference room with a couch. I made myself comfortable on the couch.
- I asked if we could play hangman on the wall board.
Grandma would fill in the blanks for us. She and I made little words, like
G-o-d.
- Then it was Grandpa’s turn and Grandma asked him how many
letters. He just smiled and said, “16”. I busted out laughing so hard that I
almost fell on the floor! I knew Grandpa didn’t know any words with 16 letters.
- When it was time to go to NYC, Grandpa and Grandma watched
them put me in the ambulance with my mom.
- From there, the Sanford Children’s Hospital plane flew me
from MN to NY.
- When I got to Memorial Sloan Kettering, I met more doctors
and they ran some more tests.
- The treatment they were going to do was a non-invasive
T-cell treatment.
- The T-cells (or fighter cells) would come from people who
had the Epstein-Barr virus, which most people, over 90%, have been exposed to.
[- EBV can cause infectious mono, but it isn’t mono. It is
suspected to be related to things like chronic fatigue syndrome and even
multiple sclerosis and other auto immune diseases.]
- In the trial study, specific T-cells that are trained
against EBV are gathered from people, and are administered into the patient,
injected from a large tube into the port, or as Grandpa would say,
“like a hog shot”.
- My own T-cells were coming in but were not plentiful
enough or strong enough to reverse my condition.
- I was given T-cells three times (once a week) and then
would wait three weeks to see what the results would be. This was called a
round. I had three rounds, and then was told that I was cancer-FREE! July 18,
2014. It was a nice birthday present for my mom, who was born on July 18.
- During my hospital stay at Memorial Sloan Kettering, I got
to meet someone very special…Taylor Swift! I didn’t know she would be coming
until the very morning that she walked into my room.
- We visited for about 20 minutes. It was really exciting!
She did a selfie with me, cheek to cheek.
- Then she said, “I was almost named Shelby”. She explained
that her parents decided against it because then she would have been “She’ll Be
Swift” and joked that she may not have grown up to be a fast runner.
- My between-round times were spent out of hospital, in the
Ronald McDonald House.
- My mom spent most of that time with me, though Grandma and
Grandpa got to stay for three weeks with me in NYC.
- Mom and I walked nearly everywhere, well, I was usually
pushed in a wheelchair.
- We did take a bus once and a taxi a couple of times. We
had a boat ride to the Statue of Liberty. We went to Time Square (and I got to
eat at Bubba Gump Shrimp), Little Italy, Ground Zero, Grand Central Station,
the Empire State Building, Wall Street, and many trips to Central Park.
- I even got a cupcake out of a Cupcake ATM!
- The first time that my mom wheeled me around (exercise for
her, she liked that!), we just went exploring, up and down avenues, going into
stores…And I came back pooped!
- One day the doctors and Mom decided it was time for me to
start walking. But about every 10 steps I had to sit down. Over time, I started
doing a lot better and then I began walking everywhere, with my mask on, of
course.
- I now have my energy back, I don’t nap as much as I used
to, and I walk a lot…home from school, walks with Neal, and walks with Grandma
and Grandpa.
- There are a couple more things worth saying.
- The Ronald McDonald House in Minneapolis gave me and my
mom tickets to a Minnesota Viking’s Football game, and while my grandparents
were there with me, they gave us tickets to a Minnesota Wild Hockey Game. We
sat in a box seat booth that was provided by one of the players, complete with
food and beverages, and overlooking the arena.
- Between T-cell treatments, for my 18th birthday, Mom had
been trying to get a corporate angel flight from NY to FL so she could take me
home for my birthday. But there didn’t seem to be any flights available.
- Then, the afternoon before my birthday, a lady called to
say they had a flight for us. Mom asked where in FL was it going?...hoping
somewhere around Tampa which is only 50 miles from where she lives.
- And the lady told her the flight was going to a little
airport just 5 minutes from where my mom lives. Then my mom asked if there
would be a return flight. And the lady said, “Yes, just call us when you get
ready to go back.”
- Mom said she heard that the plane belonged to somebody in
the Minnesota Vikings organization. The plane came from Minneapolis and picked
us up in NYC and flew us straight to the little airport, and we were the only
passengers. And they had miniature cinnamon rolls.
- This journey that I had been on lasted 2-1/2 years of my
life. In February 2015 we left NYC, and stopped in Minneapolis on the way home
to see Dr. Tolar, my bone marrow transplant doctor.
- We asked him if there was anything that they had gained
from my experience.
- Dr. Tolar said that because of my experience they have
finally funded to get the equipment for the T-cell treatments there in
Minneapolis.
- What he didn’t know was the way I had answered a comment
of Taylor Swift’s. She had said, “I’m just so sorry you have to go through this
at this time in your life.” I replied, “I would rather go through it than a
little baby.” Taylor Swift said to me that it was the bravest thing she had
ever heard.
- But that is God’s heart in mine.
- When Dr. Tolar told me to go home and live a normal life,
I asked him, “What’s normal?”
- I can tell you now that “normal” is having Jesus in my
heart.
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