September 8th, 2020

The race doesn’t always belong to the swift nor the battle to the strong. It belongs rather to those who run the race, who stay the course and who fight the good fight.

Carl Yastrzemski

Good morning, Chang Gang!  Yes, yessss, I know it has been a while and I want to first and foremost apologize to everyone that tunes into my blog for such a delayed entry.  Life happens and I have been a little embarrassed to post since I ended up having a relapse in my sobriety.  I will dive into the specifics on a future blog for sure and spare no details, if I cannot keep it authentic and raw… then what is the point!?

Let’s get this morning started with a shoutout to “The Coffee Cup” here on Hay Street in Fayetteville.  This a very quaint coffee shop, right in the center of historic downtown Fayetteville, North Carolina and they host a variety of flavorful coffees and baked goods for your pallet’s pleasure.  I have decided to try their red velvet raspberry mocha latte and let me tell you something right quick!  This is such a delectable beverage to start my morning and give me the jump start I need to kick this day into gear!  As much as I wanted to try one of their enticing looking cupcakes, I decided to tread lightly and go with a traditional buttered croissant. Cheers! You can find them via Instagram: @thecoffeecupus.  If you are every in the area, it is a must to swing by and enjoy the brew & view!

So today is September 8th, 2021.  This is a very special day due to it being the one-year anniversary of a procedure that changed my family’s life for the long run, I am talking about marathon of change, a triathlon of blessing, and a great race of endless hope & happiness.  This was the day I was able to donate bone marrow to my brother, Wilshon, in efforts to cure his sickle cell anemia!

Some of my earliest memories in life involved me seeing my brother in the hospital consistently and watching him suffer in pain due to him being born with the disease sickle cell anemia. 

“What is sickle cell disease (SCD)?

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. If you have SCD, there is a problem with your hemoglobin. Hemoglobin is a protein in red blood cells that carries oxygen throughout the body. With SCD, the hemoglobin forms into stiff rods within the red blood cells. This changes the shape of the red blood cells. The cells are supposed to be disc-shaped, but this changes them into a crescent, or sickle, shape.

The sickle-shaped cells are not flexible and cannot change shape easily. Many of them burst apart as they move through your blood vessels. The sickle cells usually only last 10 to 20 days, instead of the normal 90 to 120 days. Your body may have trouble making enough new cells to replace the ones that you lost. Because of this, you may not have enough red blood cells. This is a condition called anemia, and it can make you feel tired.

The sickle-shaped cells can also stick to vessel walls, causing a blockage that slows or stops the flow of blood. When this happens, oxygen can’t reach nearby tissues. The lack of oxygen can cause attacks of sudden, severe pain, called pain crises. These attacks can occur without warning. If you get one, you might need to go to the hospital for treatment.”

-https://medlineplus.gov/sicklecelldisease.html

I recall this one specific occasion, I couldn’t tell you what year it was or how old we were but I know we couldn’t be any older than 5/6 years old (We are Irish Twins, born 13 months apart). My brother was in the hospital due to a pain crisis that seem to overtake every inch of his body and my brother was pointing out the doctors that he was experiencing a lot of pain in his knees.  At the time, modern medicine (looking back) wasn’t too advance when it came to treating sickle cell pain, so sometimes it seemed like they were experimental in their treatments on my brother. This particular time, I recall them putting IVs in my brother’s knees and trying to infuse the area directly with pain medication and the echoing screams my brother cried out will forever be engraved in the him hippocampus of my brain. This became a norm throughout the years and I could never understand why I couldn’t take his pain away and always asked myself why I did not suffer like this… further more I was always intrigued by how he was always happy as a child, teenager, and an adult living with this condition. Hospital visits, blood transfusions, various pain medications, not being able to enjoy the simple pleasures in life (living in a southern climate, swimming, working out, anything that involved the rapid changing in temperatures, having a child, and many more things us healthy people take for granted) … this was his normal and he still managed to thrive in his relationships, his education, and his employment without a single complaint.  If anyone knows my brother, the first thing they will tell you is there is not many people in the world as him.  You would have to meet him and find out yourself if you have never had the opportunity to.

This transitions me into late spring/early summer of 2020… There was a lot going on in the United States at the time.  George Floyd was the most recent African-American to be slain live by a police officer and people were infuriated, hurt, upset, and took to the streets in protest everywhere domestically and foreign.  I was stationed in Germany at the time and it hurt that I could not be there with my people and fight for the cause.  There were many phone calls where tears were shed and all I could do was support my people anyway possible from abroad.  Around the same time my brother had been hospitalized a few times already within the year and it seemed like none of his medicine was working and he would not stay healthy enough to even be at work for consecutive days.  At one point it had become harder for him to breath on a regular basis, the pain was not letting up, and the scariest thing was when he had a resting heart rate of 150 BPM and the doctors were not able to diagnose the cause.  They tried some new medication that seemed to be more problematic than healing and I could feel my brother starting to edge towards giving up in this life long fight.  One night he called me, he expressed how tired he was of being in pain and not being able to just have a normal life and just expressed this distraught emotion that was foreign to me.  This was superman talking to me, someone I looked up to when it came to resiliency and I felt it to my core and just tried to comfort him as much as I could.  I knew I had to get home to my brother and I fought tooth and nail to get emergency leave so I could be there for him. 

I ended up spending the summer in Maine and during one of his appointments in Boston, MA we were given some unexpected news…. I was a 100% match for a bone marrow transplant.  This was sometime in July and we were then told that they could do the procedure as early as September and when they asked us if we would want to go forward with is… we looked at each other like “the Fuck?!” and then gave the doctor an approving “yes”.  The doctor being to explain the procedure and the risk vs reward for both of us and I knew at this point it didn’t matter if my life was on the line to save his, I was going to do whatever was needed of me to attempt to better the life of my best friend since 1987!  Fast forward to September 8th, 2021… My brother has already been admitted in this hospital as they conducting pre-surgery procedures to remove his bone marrow and get ready to transplant mine via IV to his body.  They extracted the bone marrow from my hips through 8 different entry point to a total of around 32 different injections sites to get the volume of bone marrow that was needed.  I checked in, they put me to sleep, and I woke up with my lower back so mothercluckin sore, woOOoo, I couldn’t even walk… but damn it was so worth it!  I was admitted overnight and luckily, I was on the same floor as my brother.  I remember him coming to visit my room when I woke up and the anesthesia wore off and he had an IV in his arm and showed me the bag of marrow that was being transferred to his body.  All we could do is laugh at the point he was vising my room for once and just kick the shit for a little bit until he went back to his room to rest, what a great day!

After the procedure my brother had to go through chemotherapy and was on a lot of different medications that was going to affect his body for the worst before it got better. It was hopefully the last and final fight and I can tell you he battled harder than anyone could and had a wonderful support group (his girlfriend Molly, our cousin Andrell and his girlfriend Shannon, our best friend/brother Nick aka NikLuis, and all of the friends and family local & abroad). When I had to leave back to Germany, I knew he was in good hands for the remainder of the final stretch into hopefully being sickle cell free…

Here we are a year later and this was my brother’s social media post today;

“One year ago today! I still won’t forget all the love and support everybody showed myself and Khari Changasie without you the motivation and beginning of this journey would not have been the same. I’m happy to say in one year I have not had any sickle cell pain, infusion visits, blood transfusions, hospital stays or anything regarding sickle cell disease. In the past year I’ve began to grow in ways I couldn’t fathom before the transplant. One phrase that sticks in my mind, “do not waste the opportunity that you once prayed for.” Trust me there were many many long nights that I prayed for this. This opportunity will not be wasted. Thank you all who have reached out in one way or another. I’m forever grateful.”

I am forever grateful for all the higher powers that allowed me to be a match, for the team of doctors at Mass General, for the support of our friends and family, and lastly grateful for my brother, my best friend, being able to fight all those years to get to this point and live a sickle cell free life!  He continues to be an advocate for the disease and I know we both wish we could cure everyone with a snap of our fingers.  Lastly, I would like to part ways with you all today by saying, do not take life for granted. Take in that breath of fresh air, enjoy that scenic view in the distance, take in that love around you, and enjoy every opportunity you have to just live and enjoy life.

Thank you for reading, tip your barista, and as always… I will clean the table!

We’ll talk soon, Ciao!

Summer Time in Maine (Pre-bone marrow transplant)

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