Chumbawamba-I-Get-Knocked-Dow-526039

I get knocked down, but I get up again

It’s been a little over a year since my diagnosis of Severe Aplastic Anemia and my treatment at NIH. I just had my one-year follow up and bone marrow biopsy number 6 at the NIH last week.

Biopsy2015
My 6th bone marrow biopsy in February 2015

 

Those biopsies never get easier. It’s been a week and I’m still a little sore. But overall, it’s not that bad. I did my regular 3 mile walk the next morning with a big bandage on my butt!

MyButtHurts_Fullpic_1The doctors at NIH are pleased with my progress, considering me a “late responder” to the treatment. My blood counts, though still low, are steady or slowly increasing…but the most important thing is that I haven’t needed a transfusion in 3 months! My neutrophil count is above low normal at 1700, platelets are 35000 (need 150000), and hemoglobin remains 9.9.

Life is pretty much back to normal; with the exception of my endurance, I’m able to do most everything again. Like eat sushi! (I’m still staying away from contact sports and raw oysters though!)

Sushi2015

I heard this song again on my iTunes last week. Music has always been important to me, but now I listen for the meaning to the words in the song. Watch the Tubthumping music video on YouTube.

“I get knocked down, but I get up again. You’re never gonna keep me down.” from Chumbawamba’s “Tubthumping”

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In the past few weeks, I’ve gotten some amazing news. I’ve heard of 7 people from my bone marrow donor drives that were potential matches, including 3 from the LSU athletic training drives we did last fall, which is going to be a nation-wide program for Be the Match!

LSU-BTM-driveBut the one that makes me the proudest is my cousin Daniel Sommers, who was a perfect match for a bone marrow recipient he’s never met. Daniel got swabbed at my first bone marrow drive last year, and donated his stem cells a few weeks ago in Dallas.

DanielBMT

70% of bone marrow donors are unrelated. All it takes is a quick swab to get in the registry. If you are a perfect match, 75% of the time, all you do is donate stem cells just as if you were donating blood!   If you are between 18 and 44, please join the registry through www.bethematch.com. If you can’t register, consider donating to Be the Match.

And just today, my local friend with Aplastic Anemia, Rachael Savario, who received the same treatment as me, posted on Facebook that her blood counts are now normal! And I share her call for others to continue donating blood and platelets that saved BOTH of our lives! Many people with other conditions like cancer need blood. Please donate blood or platelets if you can!

Rachael-FB

As you know, I wanted to make this a positive and inspiring experience for everyone. Everything happens for a reason. My Aplastic Anemia and sepsis has made me a different person. We’ve increased awareness of Aplastic Anemia, added hundreds to the Bone Marrow Donor registry, raised money for AAMDS and Be the Match, and collected many pints of blood and platelets. And so many people have seen the power of prayer work!

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Even though I’m feeling good, I will continue the fight. I still have Aplastic Anemia, and probably always will. I will continue to get more bone marrow donor registrants and blood donors. I will continue to share my story. I hope this continues to give inspiration and hope to others who need help.

everydayifight

Fight. Donate. Pray.

#Mojo

 

14 thoughts on “I get knocked down, but I get up again”

  1. Amazing news! I second Mary’s comment & I think we need to get shirts. #MOJO on the front & “#Wegotdis4:13″ on the back:)

  2. Great new Phil proud to be your friend I know what you have to deal with. Keep the faith and if you need anything from me just call
    Joe Mistich

  3. Mojo, baby, mojo!! Prayer is a VERY positive and real thing! I am so happy for you, Phil, and your wonderful family. Chrissy has a great idea!

  4. You terrified us all, in the very worst of it, a few moments at OLOL your only request was to “take care of Ang”, I admired the hell out of the two of you before this and how you both have endured this journey together (even that first class flight back to NIH) is such aninspiration. You are both so special and very loved and clearly God has got dis. Love your favorite sis n law

  5. Hi Phil,

    All the best for you and your family in the future! You are the best fighter i know…Keep fighting…..you help so many people around you.

    Hope to see you soon here in Denmark, or in USA.

    /Tim

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