shahonna Grove
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My Gift of Aplastic Anemia

shahonna Grove
Posted by
24 Feb 2016

If I could say anything about my life it would be it didn’t work out the way I planned and I’m better for it.

Here I am almost 11 years after I was told I had two years to live,
And not only am I living. I’m thriving.

A major part in this journey for me has involved taking 100 percent responsibility for how I was going to turn this setback into a comeback.
Until something devastating comes along and makes us look at our lives, we really never stop to do so. we never think of changing.
If there is no reason to change the way we do things and strive to make ourselves better ,we stay safe and stagnant in our lifestyle patterns and behaviors even if they aren’t working for us.

Having your world turned upside down with a life-threatening illness diagnosis is one of the best things that could ever happen to me, because when the bomb went off and my world came crumbling down around me, there was no longer anything to hide behind.

 “Strike me down and I will become more powerful than you can possibly imagine…” ~ Obi-Wan Kenobi

I was born February 4th 1976  to a 16-year-old mother, I don’t know the entire story and I probably don’t care to know, I was placed in foster care for a year and then adopted by the foster care family with whom I had been placed with at two days old.
A year later, I would fall off my tricycle,be rushed to the hospital, bruised and bleeding so bad, my new parents would be suspected of child abuse.

Upon investigation, and a battery of tests they found that I didn’t have any platelets or red blood cells. After being stabilized, I was transported  to Johns Hopkins Children’s Hospital where I was placed in ICU,transfused and not expected to live.
Long story short, I did end up living and went on to be diagnosed with Evans Syndrome.

Evans syndrome is an autoimmune disorder in which a person’s own antibodies attack red blood cells (RBC), which deliver oxygen to body tissues, platelets (which help blood clot), and/or neutrophils (a type of white blood cell that helps fight infections). The disorder resembles a combination of autoimmune hemolytic anemia (AIHA; the premature destruction of RBC), thrombocytopenia (too few platelets), and/or neutropenia (too few neutrophils). (Dana Farber Cancer and Blood Institute)

I would continue to battle Evans, (which doctors are thinking in hindsight,was probably aplastic anemia all along)until I was 12 years old when it went into full remission after starting my menstrual cycle. I would go on to finish high school,and graduate from the Broadcasting Institute of Maryland,I landed my first on air job two months before graduation with Metro Networks in Baltimore,Maryland.

I think I knew from an early age, I was a born entertainer.I remember watching Hee Haw with my grandparents thinking “Someday I’m going to Nashville and I’m going to make my debut on there.Move over Minnie Pearl, I’m on my way!”
Yes.
I was going to be a Hee Haw Honey.

unfortunately, by the time I was ready to head to Nashville, the show had been cancelled.

I worked in broadcasting for a while, and then took time off for the birth of my daughter in 2000. I felt I was ready to try something new, and I hated working so far from home, so I started working for York County Services where I was a 911 dispatcher.
Never one to be content behind the scenes, I went on to get my EMT and then enrolled in school to become a police officer. One of my internships was with mall security, where I got an offer to work as a security officer for a local power plant.

I worked at the PP&L power plant while juggling single motherhood and school. I was promoted to assistant captain after six months,and a year after that I was promoted to Site Security Manager and quit school.
By this time I was making good money,and had everything I could ever want.
I was also the biggest A-hole ever.
I was proud of where I was and the fact that I got there all by myself.
Screw the world!…at least until the bottom dropped out.

Two years after joining the security team at PP&L my joints began to ache.Finally, after going doctor to doctor to doctor for two years trying to get someone to believe that I was actually sick, I found a doctor, who did a complete work up. My hemoglobin was a little below normal, and my platelets were 96. (150-450 is normal range) He dismissed it, and asked me to come back in a year and he would recheck.

Six months later, I found another doctor, had more blood work, and this time my platelets were six.

I was hospitalized, and upon release, started having to get platelet transfusions once a month then twice. The doctor I was seeing at the time decided to remove my spleen.
The surgery didn’t go as planned and I bled out and ended up requiring several blood transfusions on the table and woke up intubated.

That’s when things went from bad to worse. All of a sudden my hemoglobin took a dive, the doctors assured me it was nothing to worry about, but I just had a feeling. It became clear these docs had no idea what the hell they were doing.

I made an appointment at Johns Hopkins where I saw an ITP specialist. I wasn’t in the room 5 minutes and she said “This is not ITP, this doesn’t even smell like ITP” She referred me to one of her colleagues who was an aplastic anemia specialist.

He reviewed my medical records, decided to do a bone marrow biopsy, and asked me to return in 4 weeks.
I went home and read up on this aplastic anemia business and  wasn’t concerned because other than the joint pain and not having blood I felt fine. I couldn’t have a life threatening disease.

I returned 4 weeks later and he said that the biopsy had come back positive for aplastic anemia.

The bone marrow produces all blood cells: red blood cells, white blood cells and platelets. Red blood cells contain the protein hemoglobin that carries oxygen from the lungs to tissues. White blood cells fight infection. Platelets are important for blood to clot.

Aplastic anemia occurs when the bone marrow produces too few of these cells. Too few red blood cells lead to a decrease in hemoglobin and symptoms of fatigue. A reduced number of neutrophils (a major type of white blood cell important for defense against bacterial and fungal infections) increase susceptibility to infection. Too few platelets lead to increased risk of bleeding or bruising. (Dana Farber Cancer Inst.)

He informed me that with my mix there was no way I was ever going to be able to find a donor he already searched the registry, there was nothing, and therefore a life saving stem cell transplant was out of the question.
My only option was ATG, a type of chemo used to “reset” my bone marrow. I agreed to undergo H-ATG.  I went home, got my affairs together and returned 3 weeks later to start the treatment.
It was one of the most horrible things that I have ever endured. After two weeks in the hospital I was released and sent home. The side effects were horrible, my gums were swollen over my teeth, I couldn’t eat,and was battling serum sickness.
We called it a fail after 6 months when my counts hadn’t budged. He suggested I come back and try R-ATG.

Same story, I went in I got treatment, I went home, it didn’t work.
Upon my return to Hopkins he sat me down and told me that I should make arrangements I probably only had about a two years left to live.
Yikes.
At the time I was single mother of a 5-year-old, whom I loved with all my being. There was no way I was going to check out. I wanted her to grow up in a loving environment with her mother.

I was referred to a doctor in Lancaster, who would administer blood transfusions until my body would no longer accept them. I was warned that after a certain point my body would build up antibodies to other people’s blood and my  body would reject the transfusions,. Also, my immune system would  take a dive, and I would probably end up dying either from a bleeding episode or a common cold.

After the initial  pity party, I decided I wasn’t going anywhere, and started to fight.

Hard.

Screw this. I’m not going anywhere.

Before I knew it, it was 10 years later and I was encouraging other aplastic anemia patients to get up get out and fight this thing,and not to take it laying down.

I wanted to understand the dynamics of my upbringing. So
in lieu of counseling, I enrolled in Community College and studied Sociology . I wanted and needed so badly to understand why everybody left me. I needed to know if I was really that unlovable.
Then for a community service project I would get involved with Be the Match, The National Marrow Donor Program.
I had to say I found my niche. I was hooked.
I started doing bone marrow drives with Be the Match and met some amazing patients. Over the years, I also became very close with all of my nurses, both at the hospital and the infusion center. They have become like the family and support system that I so badly needed.

If I could say anything about my life it would be it didn’t work out the way I planned and I’m better for it.

Here I am almost 11 years after I was told I had two years to live,
And not only am I living. I’m thriving.

A major part in this journey for me has involved taking 100 percent responsibility for how I was going to turn this setback into a comeback.
Until something devastating comes along and makes us look at our lives we really never stop to do so. we never think of changing.
If there is no reason to change the way we do things and strive to make ourselves better ,we stay safe and stagnant in our lifestyle patterns and behaviors even if they aren’t working for us.

Having your world turned upside down with a life-threatening illness diagnosis is one of the best things that could ever happen to me because when the bomb went off and my world came crumbling down around me there was no longer anything to hide behind.

If I was to go on, I was going to have to build a foundation on this potentially deadly disease, which at the time seemed like cruel and unusual punishment. Little did I know, I was gifted the amazing opportunity to rebuild my life on something amazing.
I don’t think anyone really and truly knows who they are and what they’re made of until they face major adversity.

Looking back on the last forty years,I have been through so much and know it’s only by the grace of God I’m still here.
However,I realize I was never a victim. I was the  receiver of a lot of gifts that I didn’t know I needed.
People say all the time to me” I’m so sorry that happened to you.”
Don’t be sorry. I’m not
My life is so much better thanks to all the adversity,illness and everything else I had to overcome.

It is now filled with faith, truth, integrity, happiness and amazing opportunities I never thought I’d have.

Rebuilding my life has allowed me to let go of all my stories, all the hurts, the people who hurt me and all the other unnecessary things I packed on my back for this hike through life.

I come to a place where I really and truly believe in myself. I know exactly what I’m made of and I’m not afraid to get in the ring and fight for what I believe in.
There’s no more arrogance puffed up by a fake sense of self.I know exactly who I am and where I’m going,and I can’t wait to get there.

I now spend my time in doctor’s offices and hospitals getting transfusions,running a taxi service for my teenage daughter, coaching a girl’s running team,writing , public speaking,working as a Blood Cancer Advocate as well as watching Hee-Haw re-runs.
And I owe it all to my gift of Aplastic Anemia. I am so grateful for this life,and Lord forgive me if I don’t love it enough.
S-