‘Twas a Year Since

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You’ll be sitting’ jolly!

‘Twas a year since my transplant, when all through the home,

Not a thing was un “done”, not even the throne.

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We rented our live tree from Living Christmas Company, which employs military vets – yay! We picked one from from the Land of Misfit Trees, kinda like rescuing a mutt 🙂

The tree was covered with meds, masks and gloves

As a gesture of thanks for the care from above.

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To further celebrate hitting the one year mark, 10 members of my family decided to go somewhere really FUN!

Yes, back to the Magic Kingdom, the site where it all began:  https://joselynsbrawlwithshulmanssyndrome.wordpress.com/2012/05/

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Front row: Mychaela and Leason 5, Middle row: Leason 4 (my donor – I know, wtf, but it’s too late!) and Rex. Back row: Andie and Kesha’s hand.

It was a wonderful day of celebration, including rookie roller coaster rides for my niece, Andie, and my nephew Leason 5, who were balls-to-the-wall animals on Space Mountain and California Screamin’.  I’m certain my meds (it couldn’t be my age, because I’m 1  year old now), caused me to feel like sh*t when my rocket returned to earth and my coaster stopped turning me and my tummy upside down.  I didn’t let the urge to pukify the flower beds stop me ~ ! was stoked to be going on these rides just a short 12 months after the depths of brutalness.

Uh, ya, I'll have an orange polyester nightmare with fries, please.
Ya, I’ll have an orange polyester nightmare with large fries and a space mist, please.

We visited Tomorrowland Terrace, where in 1981 yours truly sold moon burgers, jupiter dogs and space mist.  Nostalgic, but wasn’t missing the attractive hair net and orange polyester hat much.  Not much at all.  Ya, I wasn’t super enthralled with the uni on Grad Nights, when drunken high schoolers laughed at me while ordering space burgers with light mayo, no tomato, medium rare.

Mom sold Fritos and apple cider here in her Indian squaw dress. She also greeted Mr. Disney every afternoon.
Mom greeted Mr. Disney every afternoon as she sold Fritos and apple cider here in 1956.

Then we were off to Tom Sawyer’s Island to visit Fort Wilderness, where  Mom worked in 1956 selling Fritos and apple cider.  We started our adventure at 9:30am and by 8:30pm, all but our 4 had crashed and burned and departed on the parking tram.  I tried to persuade Todd and the kids to jump on the monorail to Fantasyland, but I was met with blank stares.  If they had the strength to speak, I’m sure they would have said, “Are you f-ing serious?”

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With my hero donor brother, Leason 4 in front of Sleeping Beauty’s Castle.
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Andie exploring Tom Sawyer’s Island.
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Mom cruising the caves on the island.
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Our gang at the castle.
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Leason 4 and Andie.
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Andie, Mom and me about to enter CA Adventure.
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Mom, Andie and Leason 5 trying to keep their balance.
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My new Tweedle Dee and Tweedle Dum necklace to symbolize my new cellular twinship with Leason 4. I’m calling dibs on Dee.
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Three Leasons doing what they love best: shooting!
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Mom visiting her roots on the island.
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Mom, me and our ears.
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Dad on Main Street, USA.
Mom loading up the young with cotton candy.
Mom loading up the young with cotton candy.
Mom and Dad
Mom and Dad
Leason 3 and Leason 5.
Leason 3 and Leason 5.
Leason 4, Andie, Kesha, Leason 5 and Mom
Leason 4, Andie, Kesha, Leason 5 and Mom
Leason 5 all cleared for take off.
Leason 5 all cleared for take off.
Rex, Todd and Dad cruising through the jungle.
Rex, Todd and Dad cruising through the jungle.

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My dear friend, Mary!
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Beautiful, yummy PURPLE cupcake bites.

A couple of days ago, my outrageously supportive friend, Mary, asked me to go to lunch.   She said that there might be a couple others.  When I walked into Watermarc Restaurant in Laguna, what to my wondering eyes should appear, but 25 ladies that I hold SO dear!  Mary had purple balloons, flowers, menus, and purple cupcakes, and as each friend got up to speak, I became more and more of a wonderfully appreciative bawling mess 🙂  I am truly the luckiest person I know to have such amazing, lovely friends!  I was wearing my new fave ‘F’ sweater, and without asking, everyone knew exactly what it stood for 🙂

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Longtime friend, Kathleen.
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Each guest brought flowers, and they were combined into gorgeous bouquets.
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Amina! My dear neighbor.
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Vida and Janet – love them!
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With Janet and Kitty – great friends!

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City of Hope is known for its ‘wish trees’ in front of the main entrance.  My mom and I wrote wishes and attached them to one of the trees on a recent visit to COH.  This year’s City of Hope Rose Parade float is going to have replica ‘wish trees’ filled with wishes from anyone who makes a donation and writes a wish on their special Rose Parade float page:  http://www.cityofhope.org/roseparadefloat

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Mom making a wish.
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Wishes DO come true!

My last visit to COH was a great one!  I honestly enjoy my Duarte days… I get to visit with my friends on the welcome staff, the check-in staff, the appointment staff, the blood lab staff, and the clinic nurses and doctors.  They are all WONDERFUL!  As I sat in the blood drawing chair during my last visit, a young lady that I didn’t recognize approached me and said she was a student and asked if it would be alright if she “tried” to draw my blood.  I said sure, and she began collecting the tubes and stuff she would need.  Another phlebotomist that I know came over to supervise, and she reminded the student to apply the tourniquet and how to hold the needle. Everything went fine, and after she shakily filled the tubes, she thanked me and said I was her first draw 🙂  I looked at her name tag and said, “You rock, Sally!”  She thanked me again for being the only patient who agreed to let her try.  I am now on the every month plan!  Yahoo 🙂  Dr. F said he will start slowly tapering my immune suppressants, one at a time after my January appointment.  If I can keep the Graft vs. Host at bay, he’ll continue to taper until I’m at a level where he feels safe to give me my childhood vaccines.  After I’m poked with those, I will be able to travel once again to the earth’s obscure corners 🙂  Can. Not. Wait.  Merry Christmas to all and to all a good night – and a healthy, happy 2014!

COH's Hematology Department Clinic all dressed up for the holidays!
The halls are decked at COH’s Hematology Department Clinic!

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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).

44 thoughts on “‘Twas a Year Since

  1. Merry Christmas to you Jos, Nurse Bro Todd, Hero L4 and all those other Leason’s!. So many Leason’s, so little time.Gotta love the pics at Disneyland. Thanks for honorign us with a complete recovery. You make my life better for sure.
    2014 will be the best year yet!

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  2. Merry, Merry Christmas Jos and family! Here’s hoping that everyone at COH has their Christmas wishes come true. So very happy for your continued recovery. Much love to all!

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  3. This may be our best Christmas present—-this wonderful joyful report from an unbelievable survivor and her “over the top” support team. So glad you shared all your ups and downs. God Bless you all and many prayers for a fantastic 2014. Congratulations!!!!!

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  4. Hi Jos! My goodness…your imagination and sense of humor are so amazing! I know none of this has been easy, yet you make a rhyme, song, or laugh out of it all and wear your F shirt!!!
    I’m just proud to call you friend!

    Blessings to you this Christmas and yes, 2014 will totally be the best year yet!!
    Love,
    Linda….and always, ‘guardian angel’ Ryan xoxoxox

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    1. Absolutely fabulous Jos…We are sooooo happy for your recovery… We will keep you in our prayers until you are without need for any meds…What a gal…to go through all this withe such a sense of humor and fight…(USC) Lots of love, Auntie Caryll

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      1. Caryll – Thanks for all you have done for me and my fam! You are amazing 🙂 I was so excited to join you once again for a tamale making morning! Love to you and the whole Moore clan!

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  5. Amazing. What a year in review. Glad you were able to go back to the scene of the crime as a success story! A perfect way to celebrate. And love the vision of you working at Tomorrow Land Terrace. You are truly an onion. Much congrats, The Singers

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  6. So amazing and thank you for the beautiful blog! The pictures are fabulous!!! Merry Christmas and you are in our prayers always! xoxo the Millers

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  7. joselyn……….wishing you and yours a very Merry Christmas and the happiest of
    New Years!!!!! wonderful to hear you are doing so great!

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  8. Merry Christmas Joselyn!!! If there is anyone who knows that everyday is a blessing- it is the two of us:) You are a ROCK STAR!! You are an inspiration to me and many! I wish you and your family an incredible 2014- filled with health, happiness and love.

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    1. Heather! YOU are my inspiration! You have come through your big challenge so beautifully! I love seeing you and adorable Landon on Facebook! I hope 2014 brings you and your family many blessings! XO

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  9. Love the post Jos! So thankful that you are over your year mark and doing so well and able to be out and about having good times! I rejoice with you! You are Amazing and have such an Amazing family and friends! God Bless You and All and here’s to continued recovery success and a healthy 2014!

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    1. Hi Lynn and Cary – I hope you had a terrific Christmas! Thanks for all the warm support you have given to me over the past year and a half. I hope you two are doing well and I look forward to seeing you next year!

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  10. It was so great seeing you and your beautiful family at The Ritz!! You are an inspiration to so many people. Wishing you a Happy New Year in 2014! Todd it’s because of you that Jos keeps going! Keep up the good work!!

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  11. So glad to finally see a picture of you without hats or sunglasses. You look fantastic! Merry Christmas to you, Todd, and your family. Thank you for keeping this blog going. You have so many wonderful friends and a beautiful family. I can see why you fought so hard for so long and why you keep fighting. Best wishes for the New Year!

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  12. Jos, thanks for sharing the pics of the family at Disneyland and catching us up on your latest treatment plan. We hope this special time of year brings you restored health and renewed energy to go to those far off places you enjoy so much. You are the symbol of hope and what it takes to overcome adversity. Merry Christmas to you, Todd, Mychaela and Rex. Love, Lynn and Carolee

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    1. Lynn and Carolee – You have been so thoughtful and dear during this entire time, and I cherish you guys! I hope you had a very merry Christmas and I wish you all the best in 2014. I hope to see you soon!

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  13. Jos, you have had quite the eventful year (and a half!)!!! Poised, funny, smart, game, graceful, thankful and tough as nails through all of it. My beautiful friend, you continue to amaze!
    XOXOXOXOXOXOXOXOXOXOXOXOXO

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  14. Josie:

    What a fantastic e mail this is to enjoy. So much joy and enthusiasm with your precious family.

    Los Cabos was a delight and Milly Kevin and family were here there and everywhere. We did everything, relaxed at the beautiful Quierencia ? villa and only missed Brian and Divina and children who could not come.

    My darling niece, Joselyn Ann….. I am so proud of you to be such a brave and wonderful example for all of us to endure whatever comes our way with grace and charm.

    Fly now…. my love to Toady.

    Auntie Char

    Date: Sun, 22 Dec 2013 19:40:03 +0000 To: charlotte_mayfield@hotmail.com

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  15. You are simply radiant, sweet Joselyn! You’re also looking quite youthful with the short do, so Disneyland is the perfect place for your one year celebration!
    Cheers to a wonderful 2014!!
    Xoxo

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  16. One of your best posts yet Jos! Holy s%&t! I would NOT have agreed to a student “attempt” to draw my blood. I almost pass out as it is 😦 Big kudos to your wonderful daughter Mychaela for the VIP Disney treatment! The kids had a BLAST 🙂

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    1. L4 – I know you have a phobia of needles, and that adds to my overwhelming gratitude to you for your ultimate gift to me… Having you and Kesha and the kids at Disneyland on our transplant anniversary meant the world to me 🙂 We had an awesome day, didn’t we? And it wouldn’t have happened if not for YOU! XO forever

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  17. I so enjoyed your Disneyland pictures, and being able to celebrate your “year” anniversary with you. Thanks for following me at Triggershorse. I hope the “F” in 2014 is for “Fabulous!”. – Fawn [Here’s a giggle for you: My husband used to refer to me as his “Favorite F-word” (Fawn). Sweet?]

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  18. Oh My Gosh, Jos!
    Your wonderful Dr. F was just outed on KTLA’s Rose Parade pre-show on the COH float! All I could do was yell, “Thank you!” at the TV.
    Have a happy healthy New Year!

    Much love from the King family!
    Mary

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