Let’s Talk Aplastic Anemia

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Yesterday was the first day in what seems like forever that it hasn’t been raining. Maybe it’s because it was SweetM’s half birthday (what!? How can that be?). So we headed out to take some photos outdoors for some super cool products I can’t wait to tell you about!

But those will wait. Today I want to tell you about a super cool kid I know. He is the single most sweetest little boy I’ve ever known. His name is Xisto. Well, he’s 10 now, so maybe not so little anymore; but definitely still the sweetest.

He was 3-years-old when I met him. He was so happy and sweet, and I, being a lover of all children, was immediately taken with him. I vividly remember as we drove back to his house after his momma, Anita, and big sisters picked J and I up from the airport, he was fussing a bit because he was tired. Anita reached her hand back (a pose I’m all too familiar with myself now) so that Xisto could hold her hand, and he fell asleep clutching her hand like that. That picture of a tiny sleeping boy, clutching his momma’s hand has been imprinted in my brain forever. And was probably my very first lesson in parenting, multi-tasking, and unconditional love.

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J grew up with Xisto’s dad, Xavier. You know how some friendships run deeper than family? That’s J with Xavi. His brother from another mother. The man who walked arm in arm with my little sister the day J and I got married, and stood by J’s side as we made our vows to one another: praying and working hard to have a love and marriage as steadfast and strong as Xavier and Anita’s.

img_0139I’ve modeled so much of my parenting off of them. Their three children are three of the most lovely, genuinely kind human beings I know. Anita’s number is often at my finger tips anytime I’m at a parenting crossroads.

It’s no surprise we chose them to be the Godparents of Miss H and Mr. B. I knew I wanted those kind of role models and that sort of family so deeply intertwined in the lives of my children. Some of that goodness is bound to rub off, even if we live 100s of miles away from one another.

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This spring things changed drastically for Xisto. He’s the third child, the baby, of a very busy family. They’re on the go each day from 8am to 8pm with their busy schedules between school, work, Tae Kwan Do, orchestra, volleyball and church. Xisto has always been an easy going kid, learning to nap when he had the opportunity since he was a baby. He went to bed at a decent hour, woke up fine, took naps in the car and was healthy, so it never occurred to his momma that he was “more tired” than most kids his age.

At this time little red dots began appearing on his legs. His parents chalked it up to allergies as he’d just been to the doctor for red, itchy eyes and allergies had been deemed the reason for them. Since the red dots weren’t itchy or causing any issues, they kept an eye on them but didn’t worry too much more about them.

He developed some bruising, but nothing that was atypical for a 10-year-old studying the art of bow staff and nunchucks in Tae Kwan Do. After each class he’d have the same bruises, but no unusual pain, swelling, or discoloration, so again, nothing to be too concerned about or that really seemed like a red flag.

Then during a Tae Kwan Do tournament trip out of town Xavier noticed that Xisto’s gums were bleeding. Both parents assumed he over did it on some sunflower seeds and may have gotten a seed stuck in between his teeth or had scraped his gums. His momma laid in on him about his teeth brushing routine, reminded him to floss, and then put it on her mind to call the dentist.

By that Sunday Xisto’s mouth looked more like he was experimenting with Halloween zombie makeup. Monday came and he went to school with a bleeding mouth. His parents made him a doctor’s appointment, at which time the doctor said with no fever or any other symptoms, and since he had good energy levels, he would be fine until his 2 pm appointment.

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At his appointment blood was drawn and Xavier was told that the results would be be called in to them in 24 hours. At 7 that same evening Anita was running Xisto into Tae Kwan Do class, late as usual, when a call from the doctor stopped her before leaving to head for the grocery store. Blood work showed that Xisto had 0 platelets, and other levels were flagged for what was very indicative of leukemia. Any hit or fall could result in a fatal outcome.

And just like that, the world was jolted a bit off axis.

Blood work. Bone marrow biopsies and infusions of platelets and red blood cells. Two days later it was confirmed he did not in fact have leukemia, but instead an extremely rare severe aplastic anemia.

Taken from the Mayo Clinics website: “Aplastic anemia is a condition that occurs when your body stops producing enough new blood cells. Aplastic anemia leaves you feeling fatigued and with a higher risk of infections and uncontrolled bleeding.

A rare and serious condition, aplastic anemia can develop at any age. Aplastic anemia may occur suddenly, or it can occur slowly and get worse over a long period of time. Treatment for aplastic anemia may include medications, blood transfusions or a stem cell transplant.” (You can head over to the May Clinics website for further in depth info. http://www.mayoclinic.org/diseases-conditions/aplastic-anemia/basics/definition/CON-20019296)

And just like that, an active little boy suddenly began an adventure no one could have ever anticipated.

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Often a bone marrow donor is the first course of action. Having two older sisters, everyone’s fingers were crossed. His sisters were matches for one another, however they were not matches for Xisto.

So they went to Plan B: Immunosuppressive therapy.

Guys, this kid is the strongest, toughest, most courageous person I know. Followed closely behind by his momma and papa. The treatment is rigorous. He’s been poked, prodded, and has spent way too many nights in a hospital bed instead of at home where he belongs. But he’s been so positive through this all. He knows it’s just a detour before he’s healthy again. He’s a fighter, and he’s meeting this long road head on with positivity. And I suspect, there are a lot of nights that he’s holding his momma’s hand just like that night so long ago when he first stole a piece of my heart.

And three months into the immunosuppressive therapy, his bone marrow has gone from 5% to 30%! That means it’s taking. There is always a chance of it going backward, but at this point, there is a far greater chance of it going forward. Xisto and his family still have a loooong road ahead of them; but with an excellent and dedicated team of doctors, and with so many people loving, supporting, and praying for them, they’re getting there

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If you’re not all ready a registered bone marrow donor, I urge you to be. It’s very simple and absolutely free. You can go here to register. They mail you four cotton swabs. You simply swab your cheeks and mail it back in. I know several of my friends have all ready done it, and it means more to me than they know; but it means even more to those who are in need of a bone marrow donor. It might not be Xisto you match; but if ever you are matched with someone, what a beautiful, selfless gift.

Also, if you find it to be the right thing for you and your family, I urge you to go here and donate to this wonderful family to help with medical expenses. Any little bit helps.

 

*** Each person who shares this post and comments below that they shared will be entered in to win a free Starbucks gift card (winner to be determined Friday, Aug 26 2016). So share away so we can spread awareness about severe aplastic anemia and flood Xisto with so much love and prayers while he spends yet another night in the hospital.

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