Remember Mekhi? He’s Getting Ready for a Bone Marrow Transplant!

Mekhi still going strong after a 3 hour nosebleed.

Almost a year ago I blogged about my high school (go Andrews at Champs!) classmate’s son Mekhi who has Fanconi Anemia.  Through the magic of Facebook, I get to see his and his mother’s progress with handling this illness.  Simone always posts pictures of Mekhi being a fighter and dealing with the challenges that Fanconi Anemia causes.  Only a few weeks ago she posted a picture of him surrounded by doctors as they helped with a nose bleed.  He looked so calm and unfazed by the hullabaloo.  Around Christmastime last year that she posted a pic of him healing from a fantastic bus’ head.  He was being a typical likkle pickney who didn’t listen and so took flight into the coffee table from the stool…the coffee table won.

Mekhi is still going strong and after being placed on the list last year will soon be receiving a bone marrow transplant.  To document the events leading up to the transplant and the extensive recovery that he’ll need, Simone has begun a blog: Walking in Faith: Our Journey. Our Life – Mekhi’s Journey Through Fanconi Anemia.  There is also a Facebook page with lots of pictures.  Not only is the blog a way to keep Simone in touch with the FA community, but it’s a way for family, friends, and well-wishers to understand the process and to offer support (monetary or otherwise).  I also imagine that writing the posts will be a sort of therapy for Simone.  I cannot imagine what she’s going through as she tries her best to help her son fight this illness…but she’s doing it well.  In her first blog post she explains how the handled the diagnosis and how she’s come to the place she is at now

I’ve never had any medical concerns about Mekhi he was growing nicely and gave as much trouble as another, however in 2010 during a routine check up visit his pediatrician noticed his platelet counts were in the 20,000 (they should be between 150,000-450,000) we were sent to the hospital immediately and through a myriad of tests and a few weeks later he was diagnosed with Fanconi Anemia(FA). I’ve never heard of FA, so immediately i went to google and there came the flood of emotions… O.M.G

In the last two years since his diagnoses I was able to join a support group supported by the Fanconi Anemia Research Fund (FARF) where I met other families dealing with this situation. I was able to attend a Fanconi Anemia camp in Maine where I learnt so much valuable information and talked to parents who’ve gone through transplant first hand … it’s no joke! In the two years I’ve also watch Mekhi blossom in school, learn to chat patois and play ball with the best of them . I’ve also seen him take a needle like a champ, maneuver the hospital halls like a true king and demand his rights like a true blooded Leo. He’s the best.

She also explains the toll that FA has taken on Mekhi, and hopefully these stats will help you understand why he needs to replace his blood system through a bone marrow transplant

Mekhi visits his hematologist at the hospital on a weekly basis. On every visit blood is drawn and his blood levels are tested to gauge how his marrow is functioning. If his platelets or red blood cell counts are too low then a transfusion must be given – he’s had quite a few of these. So to give you an idea:

Mekhi’s levels read the following recently:

White Blood Cell Count 3.1 (ideal range is 5.0-14.5)

Hemoglobin  5.4 (ideal range 11.5-13.5)

Platelets 8K (ideal range 150-450K)

Neutrophils 415 (ideal range 1500-8500)

As you can see he is consistently out the range of being healthy. As such a transplant is needed to change his entire blood production system. 

I read that and tears came to my eyes.  I don’t like to see children suffer…most people don’t.  But then again, parenting is not for the faint of heart and children are often more resilient than we adults give them credit for (or are ourselves).

For a quick recap of what Fanconi Anemia is, check out the blog post I did that featured a note from Simone.  Also check out the National Heart Lung and Bloog Institute’s page on FA.

Dr. Mekhi checks out his hematologist. According to his Mom, he's good at using the instruments since he's been going to this doctor weekly for about 2 years.

A bone marrow transplant is a serious operation but it is one of the best treatment options available for FA patients.  Why? Because bone marrow is where our blood cells are made.  Replacing it can go a long way to addressing one of the main effects of FA.  Bone marrow is the spongy tissue inside the large bones of your body.  Healthy bone marrow contains stem cells that develop into the three types of blood cells that our bodies need:

  • Red blood cells, which carry oxygen to all parts of your body. Red blood cells also remove carbon dioxide (a waste product) from your body’s cells and carry it to the lungs to be exhaled.
  • White blood cells, which help fight infections.
  • Platelets (PLATE-lets), which help your blood clot.

It’s normal for blood cells to die; the lifespan of red blood cells is about 120 days and white blood cells live less than 1 day while platelets live about 6 days.  As a result, your bone marrow must constantly make new blood cells.  If your bone marrow can’t make enough new blood cells to replace the ones that die, serious health problems like FA can occur.

A blood and marrow stem cell or bone marrow transplant is a procedure that replaces faulty stem cells with healthy ones.  During a bone marrow transplant, the FA patient gets donated stem cells in a blood transfusion-like procedure.  Once the new stem cells are in your body, they travel to your bone marrow and begin making new blood cells.  A successful stem cell transplant will allow your body to make enough of all three types of blood cells.

A gift for Mekhi from his hematologist.

Mekhi’s donor is unknown.  His donation will be cord blood transplant.  According to Simone, someone donated their baby’s placenta (umbilical cord) to the hospital and the hospital took out all the “good stuff and [froze] it” for use in a transplant.  (Look out for a post on Simone’s blog about this.)  The match was a perfect match for Mekhi.  According to the National Marrow Donor Program, cord blood transplant “plays an important role in transplant today.”  The first was done in 1988.

A bone marrow transplant is also an expensive undertaking, even with insurance.  Of course I’m only suggesting that you make a donation toward Mekhi’s care; prayers and positive thoughts are also welcome.  Even giving a little more attention, I think, to the children in your life (a hug, a special playdate or treat) or to children who need someone to give that special eye is a cool response to reading all of this and learning about Mekhi.  I only ask that you simply don’t read and click away…do what you can, act with this new knowledge…

Good luck, prayers, and love to Mekhi and Simone 🙂


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