My Hero

My Thundering Herd that keeps the HOPE alive for an ATG cure

So, I’ve been chillin’ in my germ-free bubble for over 3 weeks now, trying to dodge any and all possible body invaders such as lung pneumonia infections, liver infections, kidney infections, low pulse rate, eye irritations, high glycemia, high blood pressure, nausea, low magnesium, headache, itching. low potassium, and others.  OK, so right about now, you’re thinking, “Dude, I know her and the way she likes to fart around with her reader, so I’m going to guess that she has had all of these annoyances over the last 3 weeks and that’s why she has not written lately on her blog.”  And to that I would respond, “Weener, Weener!”  The ATG (Antithymocite Globulin – Equine) I was infused with for my first 4 days at City of Hope is known to cause adverse reactions, so that is why I had some of these…  It also is known to lower your immune system, which was already on the brink of being non-existent, so that can account for some as well.  Many of these pesky lil’ f-ers are from the meds I’m taking to combat other lil’ f-ers.  The benefits of the ATG (hopefully knock out the severe Aplastic Anemia) are not due to make their presence known for another week or two.  So, we wait.  In the mean time, we are closely monitoring all of these f-ed up reactions via 4am blood tests and vitals, CT scans, X-rays, bronchoscopies, and other terrifically fun procedures.  We are very hopeful that the ATG will kick in soon and kick my Aplastic Anemia’s sorry ass.  If that does not happen, it will BLOW, but we will move on to our last resort:  bone marrow transplant.

There is a fantastic program called the National Marrow Donor Program (www.marrow.org), where you can register as a potential donor for someone in need.  Imagine the feeling of satisfaction saving someone’s life!

Dr P did a preliminary search of the approximately 1 million registrants in the program and we learned that there were about 3,000 potential matches.  These individuals all would need to be screened for a DNA match, but my docs were pretty optimistic that we could find a close match.  In the meantime, my brother was tested, because a sibling has the highest chance of being a perfect match.

Who woulda thought back in the 70’s that my sidekick, my Boy Wonder, my Tonto, my Gilligan, my Potsie would become my potentially life-saving hero four decades later?  The one I spent hours and hours with in our beloved cul-de-sac, Olympia Way, riding Big Wheels, Schwinns with training wheels, and playing kick ball (sorry to the Pillons and the Loewes for the constant destruction to your mailboxes – first and third base).  The one with whom I tormented our next door neighbor, Mrs. Lenhart, by spying on her through the fence as she lounged by her luxurious water-filled hole in her concrete backyard, then after knowing the coast was clear, running to our front yard border donning our metal skates with Lightening, our basset hound in tow.  Just as our skates were tagging her lovely lawn/cedar chip combo display and our canine companion was pinching off his calling card, usually in close proximity to her pink flamingoes, we’d hear her front door open, then a deafening howl, “Stay off my grass!”  The one I plotted with to get everyone on the block drenched during the annual Olympia Way 4th of July Waterfight, including ambushing our neighborhood priest, Father Pillon, as he drove down the street on his way to mass.  The one I hung out with in our awesome architect-designed (Dad) treehouse in the backyard, complete with a pulley system for hoisting all supplies sky high, including our pet rabbits, Charlie Brown and Charlie Black.  The one with whom I witnessed my first R movie, Billy Jack (gladly taken by our parents in 1971 at ages 5 and 8).  My back seat companion who constantly sparred with me for a month about the imaginary line in the upholstery of the backseat of our Mercedes sedan all the way along the southern states, then up the Eastern Seaboard to Montreal for the 1976 Olympics and back through the Midwest.   The one I worked so hard with trying to scare the sh*t out of all the trick or treaters and their parents if they dared come to our door on October 31.  My dad would rig all of his fishing rods with huge gnarly spiders and we would cast those f-ers through the living room windows, successfully landing on our prey more times than not.  The one I almost witnessed the death of thanks to a faulty latch on our rental car on a Hawaiian highway.  The two of us were building forts in our luggage in the back compartment of our rental car, when all of a sudden, the latch opened, and my sidekick fell out onto the highway, I heard tires screeching to a halt and saw a big Cadillac within inches of his little body on the asphalt.  Just then I fell out (my parents were unaware that they no longer had their adorable children in the car with them, and continued on their merry Hawaiian holiday), and scraped my sidekick off the highway and we both began running down the sidewalk after our parents’ car.  After glimpsing in the side view mirror, our mom asked no one in particular, “Why are our children running down the sidewalk?”

Leason and me at Eisenhower Park, where we would capture pollywogs, take them home, suffer the brutal stench until they turned into noisy irritating frogs, when our mom would make us flush ’em, which would make us cry.

Somehow we manage smiles even though our darling matchy sweaters are as comfy as brillo pads.

I have an endless amount of treasured memories of my sidekick and me, and thanks to him and his ultimate commitment to me, there will be many more to come 🙂  It’s been determined that he is my perfect bone marrow match!

LEASON FREDRICK POMEROY IV IS MY HERO!

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I am a survivor of two extremely rare diseases, thanks to over 100 blood transfusions and ultimately, a bone marrow transplant. My blog, joselynsbrawl.com, chronicles my adventures through medical offices, operating rooms, clinics, transfusion centers, hospital transplant floors, victory celebrations, and finally my bucket list items – all with a humorous and sometimes profane twist. My goal is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness (or two).

95 thoughts on “My Hero

  1. Our whole family is ecstatic about the match…you are in our thoughts daily… our kids remember the creative play when they got together with you and Leas…good times in the past and great times in the future…Much love…Auntie Caryll and Uncle Butch…

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  2. Can’t believe your courage and wit. So glad to hear some good news and hopefully lots more. I am sure you draw courage from Little Rabbit Froo Froo!!! Hang in there Jos, the best is yet to come.

    With love from Helen and Jed

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  3. I don’t know what is better – your lovely “flash back” tribute to your brother, or the classic pictures. But the BEST is the good news about the match. So glad to hear of it. We are thinking of you and the Miller family often. Wishing you strength and an expedited recovery, Stacy, N8, Elory and Elias

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  4. Our hearts soar with abounding joy and gratitude! LOVE, the elixir that heals and nourish our soul. No greater power will we ever know. Angel face and light that you are, we send our abundant LOVE to All! XOXO

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  5. Whew hoooooo! Happy, Happy Day. Leason is a match! We are thrilled to hear the fantastic news! Sending hugs and prayers your way-everyday. xo Kelly & Bill

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  6. I AM BEYOND ECSTATIC TO LEARN THAT UR BRO IS A PERFECT MATCH! HOW WONDERFUL 🙂 That’s what siblings are for! Thanks for the update. No blog posts make for an unexciting day at law school…I am thinking of you always. Hang in there J-DAWG! LOVE YA MUCHO XOXO

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  7. This is the best news ever!!! I was so elated to hear this that I had to post it on my FB, and you know I never post anything! Don’t stop writing it’s such a gift! xxo Nettie

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  8. I so enjoyed going down memory lane with you about your brother and your adventures. Thank God, you were not an only child! Keep on riding this trail back to health!! Love you Joselyn, Cookie and Pete!

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  9. Your strength and courage is so inspiring! Our prayers are with you, Joselyn, Todd, Mychaela, and Rex. Love, The Christian Family – Brad, Marilyn, Kelly, John, and James

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  10. Hi Jos, It sounds like you have been having a hard time, but good times are ahead. We are so glad about the good news that Leason is a bone marrow match. Our prayers and thoughts are with you. Keep up the good work. FIGHT ON !
    Love, Bonnie

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  11. Did they inject the ghost of some heretofore unknown comedy writer with the rest of the “stuff” they introduced to your bloodstream? I have no idea how someone in a plastic bubble, who undoubtedly feels like s–t can write something so engrossing, entertaining and inspiring. What a great tribute to your brother — and to the 70’s. Of course we saw R rated movies at ridiculously young ages! Why bother with a baby sitter?! Your amazing generosity shows through. Despite your hardship you go out of your way to make everyone else smile and feel better. Rest so you can continue to fight on. Thank you for your posts! With much love, Samantha and the Washers. (Yes, we’re going to go out on the road soon…!) (;

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  12. Such great news. We are praying for you a lot down here and can’t wait celebrate when this is all over. Preston can’t wait to meet you and the rest of the fam too. Lots of love, Hunter & Jackie

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  13. SO happy to hear the good news about Leason matching you perfectly!! Keep holding on, Jos! We know you are galloping to the finish line of curing this ______!!!!!!! We are with you all the way! We love the herd, we love the photos, we love your humor and attitude! And we love you and your whole family!
    Xoxo

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  14. Hi Jos, was in your neck of the woods today and swung by to say hi and give some love to my poky pal and her fam, but was told at the ‘guard ‘gate that I must have clearance by the fam – unfortunately I didn’t have Todd’s number, so I carried on, but wanted you to know that I am with you in spirit every step of the way. Here’s to bone marrow donors!!! Leason is my hero too 🙂
    p.s. our whole family is signed up!

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  15. We love you Jos! Still pray for you every night with my kids! My parents were bone marrow donors for many years until they became to old. I think it’s awesome your bro is a perfect match. My mom is kickin breast cancer’s ass right as we speak. I’ve been a mess, but now I
    ‘m ready to fight! I ran up saddle back Mountain last week to relieve stress, and I have been reverent in my prayers for both you and my mommie! We love you and love your spirit! Keep it up Jos! Love, from the Soylular clan

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  16. Hi Jos, So glad to see you blogging again, how you do it is amazingly hysterical. Ran into your folks on Saturday night at a wedding, cant tell you how much I love them both, but I can tell you how much they love you!!!!!! In fact there’s an unbelievable amount of love from a whole lot of people for YOU. You’ll win this battle and your tude is such a wake up call for us all especially me going thru the toughest time I have ever faced. Your truly inspirational Jos and dont think this is a bunch of BS cuz it aint. So there….

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  17. Bonjour, Joselyn. Blessings, prayers, well wishes, equinal mammal like super gumby powers, noble green buddha meditative thoughts, big bear hugs wrapped around you and your bubble, and my constant thoughts for your wellness and recovery son avec toi.

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  18. The memories of Esienhower Park just came flooding back! Loved to go there with my sisters! And, stop at the new Orange Mall for a delicious Orange Julius! Memories keep the mind sharp and the heart content! Keep on blogging!

    Love,

    Laura

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  19. Hi Jos:

    I loved your latest blog. Oh, how that brought back memories of you and Leason. And I thought you two were such perfect children. At least, that is what your Mom lead us to believe. Ha, ha. Glad you were more like my little devils. In fact, one of mine still is a little devil, but I won’t mention names. You may have noticed her horns at one of the family gatherings (and she wonders why her kids are devils). Payback is great for Grandparents, let me tell you! We are still hoping everything kicks in the way it is supposed to, and you don’t need the bone marrow transplant. You hang in there, and give our best to Todd and the rest of the family. We love you.

    Love, Aunt Wendy and Uncle John

    P.S. Do you remember the time at Fall River when we played Balderdash, and the word squitters came up? I’m quite sure Todd will remember. Well, our Golden has been having squitters on and off for a while and we just can’t figure out why. Poor little thing. Every time I think of that word, I have to laugh. We had such fun with it, and nobody guessed what it meant. Every once in a while, I just have to tell John I have squitters. I know, I’m a sick person! Ha, ha. Just a little family joke.

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  20. Hi Brave and Feisty neighbor….You are always in the thoughts and prayers of the 500 block. We were thrilled to hear about Leason – tho’ we hope he is not needed – and loved the family stories and. pictures! Your spirit amazes us. Lots of love…….

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  21. Hi Jos,

    I just read all of the comments and saw Wendy’s comment about “squitters” at Fall River. I wasn’t in the game, but I remember the laughter. We had so much fun up there with our Thanksgiving celebrations. How about Leason’s 21st birthday when we tested his knowledge of drinks. We took turns mixing drinks, gave them to him and he named every one as soon as he tasted them. Manhattan, Rusty Nail, Rob Roy, White Russian, Tom Collins, Grasshopper and on and on – the kid did not miss one! I didn’t even know the names of most of them, and had never tasted any of them. That USC – WOW what a school for an alcholic education. Your blog brought up so many memories – You and Leason – so young on Olympia Way – and Lightning – I think Lightning was, as your great Grandma used to say a little “teched” – now there’s a word for Balderdash. And as far as Balderdash goes, think of all the new words you have learned in the past few months. Whew, I can’t even pronounce some of them. Well, it sounds like you have the pesky lung spot on the run and that the horse gu may be starting to take effect. We all hope that the herd you have in your room is urging the serum on and it will do its job. Even though we can’t see you, or get inside your bubble, be assured that we are all in there with you. We love you more than any words can tell.

    Love, Lynn and Carolee

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  22. You are so freakin amazing Jos. Kick the ass of the little f-ers and show them who’s boss!!! Thinking about you daily. Love and miss you!

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  23. Hey Jos – thinking about you everyday! – wanted you to know that i am in the registry as a bone marrow donor – Let me know if i can help!! sounds like you are in good hands with your Bro!

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  24. Such great news! Love your post – could feel the so cal sun shining through your childhood mems. Sending you prayers and love.

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  25. Bula Jos and Todd! Your brother is a stud…and so is his sister…loved geting the great news…we have been unable to connect with internet and wondering about sweet YOU, Jos! Lots Of LOLOMA’s from David and me.

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  26. Hi
    I was soo glad to hear your numbers have improved with your lung spot and kidneys! Much to rejoice in – remember it will keep you sane and moving ahead!
    I”m feeling like a kid in a candy store! I got Dish Network-love it! Watching Mater Dei football now -tomorrow SC.
    Hang in there. Fight on we are all routing for YOU!,

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  27. Dear Jos,

    I think of you every day, give um hell! You are so lucky to have such a wonderful family. ,deb and mom tell me how supportive they are. i spoke with your mom last week and it was real nice to talk with her. always remember, “little ba”, and bigga ba!! oh and lightning he was something!! all my love to you and yours. david_________________________________

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  28. Hi Jos:

    We are still thinking of you all the time. Johnny wanted to give you a call at the City of Hope, but I didn’t think you could get phone calls. He said to give you his best and is thinking of you. He just moved into a new “cabin” the size of 2 parking stalls. He is using wooden crates to decorate and it looks pretty good, according to him. He is happy, and that’s all the matters. He has a truck that runs on vegetable oil, of all things. Only Johnny!

    About that picture of Leason, is he trying to show of those cute little nauggy pies of his or what? (he always did have cute ones, you know). I loved that your Mom used that term). Of course, you have the cutest ones, Jos! Pretty soon, you’ll be out of there and showing yours off again in those cute outfits that you wear. Of course, it you designed the outfits, they would even be cuter! I can hardly wait to see what you will do next with your design career. You are so talented, Jos. Hey, maybe colorful hospital gowns with flair would be the next thing on your to do list! Yeah, I could see you doing something like that to cheer people up a bit.

    Well, I must get back to work. I have to leave early today as my Golden is still having squitters. (We’re going to start calling her Squitters she has it so much.) I hope it isn’t contagious. That’s all I need right now.

    Take care, Jos. We love you. Say hello to Todd and the family.

    Love, Aunt Wendy and Uncle John (and Sade (Squitters))

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  29. Hi!
    Thinking of you often! Do u have your IPad in the bubble or iPhone? I play Scrabble with Frieends constantly. If you like Scrabble and are up to it maybe it would pass the time and be fun for you?! I’ve sold 42Laker tics but I have a lot left so I’m beating the pavement trying to sell them
    My prayers go towards you often!

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  30. Hi Jos….I’m working on a painting today and you have popped in and out of my mind. So I’m putting my brush down to tell you so!
    I do hope today is one of the better days for you in your Bubble!
    Hope you are sketching a lot……and I’ll bet you have a good library collection in there…..I just finished a book about the last Hawaiian royalty, Princess Ka’iulani. Very interesting…..between she and “Kate” I’m glad I am a commoner…..:)
    Just thinkin’ about cha!
    Xo Kristi

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  31. Aw, geez, this one made me cry. What an awesome tribute to your bro — and what incredibly terrific news that he is a match!!! I am pulling for you, Jos!! Stay strong. You are in my prayers. And thanks for sharing your journey — it was a long few weeks waiting to hear how you were doing. Love, Tara

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  32. Hi Joselyn, just heard the news, I Love you girl, your inspiring, the McCullough clan is pulling for you all the way, so glad to hear Leason is a match!! You are in are thoughts and prayers…Stay strong and you are definitly one in a million!!! xo Kathalleyne

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