That Time St. Jude Saved My Life

I was born with sickle cell anemia. Sickle Cell is a genetic mutation that can transform my red blood cells into a less flexible “sickle” shape if I’m not careful to stay hydrated and live a healthy lifestyle. When my cells are sickled, I go through what is called a crisis, in which I experience severe pain that can last several days. Perhaps more detrimental, sickled cells limit oxygen flow into the bloodstream which can cause serious health issues including organ failure.

Thank God I have not had a sickle cell crisis in over 8 years, a fact that I attribute to my commitment to drink plenty of water every day, and fill my diet with a variety of whole foods. I feel much healthier now than I used to. My childhood, however, is another story.

When I was eight, I came down with a Parvovirus infection. According to St. Jude, Parvovirus causes the bone marrow to stop producing new red blood cells for 7 to 10 days. Typically, red blood cells live for about 4 months, so the delay in production of new cells usually does not cause any serious issues, but as a person with sickle cell, my blood cells only last for about 7 to 20 days. The Parvovirus caused my body to enter into an aplastic crisis, which means there were too few red blood cells to properly distribute oxygen to my body.

Before I even started showing any symptoms, it was a doctor that attended our church who first noticed that I looked pale. “Is Heather alright?” he asked my mother, expressing his concern for my complexion.

“She’s fine.” She answered, paying it no mind. Seeing as I was playing around the parking lot like any other eight-year-old, I certainly didn’t feel ill. I didn’t know about this conversation until years later, and even my mother didn’t immediately put two and two together. But only a few days after he made his comment on my paleness did my health and strength quickly start to degrade.

I remember feeling so weak that I could hardly take a few steps before I had to sit down to avoid collapsing. I just stayed in bed all day, sleeping, eating, sleeping some more, feeling miserable. I didn’t know it at the time, but I was slowly dying.

After about a week of extreme fatigue, my mother finally brought me to a clinic. No one realized how sick I was because I wasn’t experiencing any pain, and I had a healthy appetite, eating all the food given to me with no trouble. Also, it was not uncommon for me to go through a “weak spell” in which I felt too weak to go to school one day, but felt strong and energetic the next. My mother just thought that with proper rest and home care, I would bounce back like I usually do.

But when I degraded to a bedridden child, having barely enough strength to mumble my miseries during the few hours of the day that I remained conscious, my mother decided that it was long past time to seek out a doctor.

When we arrived at the clinic, my mother had to carry me in on her back since I was too weak to cross the parking lot. We didn’t stay at the clinic long. The nurses drew my blood, reassured me with a lollipop, and discretely told my mother that I needed to be taken to the emergency room ASAP.

I was taken to the emergency room at Le Bonheur Children’s Hospital, but the care I received was from St. Jude’s Hematology Department. St. Jude often works closely with Le Bonheur since, being a Research Center, they lack an emergency room.

I was terrified during my first moments there.  Several nurses crowded my stretcher and pinned me down in order to attach an IV to me, despite my kicking and screaming.

“Heather, you can scream, you can yell, just don’t move.” One nurse calmly said to me, right before she inserted the needle in my forearm. Of course I had received shots before and had learned to tolerate them, but there was something about the IV needle that felt more painful than any previous shot I had ever felt.

I was angry at the nurse’s nonchalance as she told me not to move while being the direct source of my pain. Partly out of defiance, and partly out of pain, I screamed my lungs out. I might have gotten out of my stretcher if the other nurses hadn’t been there to hold me down.  I didn’t understand that this was all in effort to save my life. I wish I could thank them now; could apologize for being such a bratty patient.

The chaos soon died down after the initial hour in the emergency room. I wondered why they hadn’t yet removed the needle and why I was attached to a machine, but I wasn’t hurting anymore, and was too tired to inquire.

They transferred me to a room in the ICU, and the nurses there were nice, and different than the “scary” nurses in the emergency room. I felt safe, and shortly found myself asleep. My mother stayed right by my hospital bed almost 24/7 for the whole time that I was admitted. God bless her soul.

As I spent the next few days at the hospital, I got to go to several events hosted by volunteers, such as puppet shows and story time. And since it was around Halloween, a woman cosplaying as Maleficent even visited my room to give me stylish keychains. It was in the middle of the afternoon and I was hazy from taking a nap, but once Maleficent walked in my room, all I could think was “She is SO COOL!”

To top it off, my 4th grade class sent me 24 hand made “get well soon” cards, which I read through over and over. I was really feeling the love!

Now, almost two decades later, when I think back to that time, IV’s, needles and blood transfusions are not what first comes to mind. It’s the smiling faces of the nurses, physicians and volunteers who came to my aid and made me feel like I was the only child being treated.

Le Bonheur and St. Jude saved my life while still managing to capture the innocence and spontaneity of childhood. I will always be grateful to them and I wholeheartedly support everything they stand for.

At my job, I was privileged with the opportunity to volunteer at FedEx Family House, which provides temporary homes for out-of-town families who are receiving treatment from Le Bonheur. We created hand-made cards, baked homemade cookies, and packed sack lunches for over 200 individuals. The experience got me thinking, why can’t I do this more often? How can I find ways to devote my time and energy into giving back to the organizations who gave me the ultimate second chance?

I decided to sell T-Shirts and donate 50% of the profits directly to St. Jude. If you like T-Shirts (and let’s be serious, who doesn’t?) consider purchasing one at my Store! Not only will it help to support this blog, the profits will also go towards life saving research that benefits hundreds of children just like me every day.

Thank you for taking the time to listen to my story! I’ll catch you all in the next one!

Click here if you are interested in donating to St. Jude Children’s Research Hospital!