Party On

IMG_4622
Me and my brother donor Leason 4 and my husband caretaker Todd. I would NOT have survived without them!
IMG_4624
Dad, Mom, Leason 4 and Todd speaking to the crowd, along with our amazing supporters, Mary, and Scott (VG)

To celebrate the upcoming 1 year mark since my transplant (December 14, 2013), and to honor my 2 biggest heroes – Todd, the world’s best caregiver, and Leason 4, the world’s greatest donor – my parents threw a shindig to thrash and trample all shindigs that have come before.  Due to my chemo brain (CBIART – Chemo Brain Is A Real Thing), I couldnt figure out how to embed a video in the middle of this post, but if you scroll down to the bottom, you can see Dad’s touching words, along with the first part of my Mom’s talk… Unfortunately, it cuts off before Todd and Leason 4 spoke.

From the emotionally wonderful thoughts Mom, Dad, Todd and Leason 4 shared with the crowd… to the handcrafted-by-my-father f-bomb centerpieces… to the plethora of bottles of delectable ‘F’ wine… to all my favorite foods… to the servers’ aprons emblazoned with my name… to all of the wonderfully supportive guests that attended, each wearing a temporary ‘J’ tat matching Todd’s real one (his idea)… to the ‘It’s a Miracle’ Tinkerbell they presented to me – it was a truly breathtaking affair!

The latest:

I am doing VERY well as far as blood work:  I have normal counts by all counts, counting all the counts that one counts on to survive 🙂

No, I did not get into the ring with Mike Tyson
No, I did not get into the ring with Mike Tyson
No I did not crash on my Harley and get road rash
No I did not crash on my Harley and get road rash

I am still in a tussle with Graft vs. Host Disease, as the cells in my mouth, on my lips, all around my eyes and on my face are not playing nicely with my brother’s cells.  I wish they’d take a page out of Rodney King’s playbook and “just get along!”  As I previously mentioned, I am still rocking the chemo brain.  Every day I fail to upload simple words.  Recent examples:  camouflage, Bart Simpson, and several others that I can’t remember.  I am having no difficulty whatsoever in remembering ‘bad’ words, however.  You could say I’m fluent in profanity 🙂

Dr. Fantastic is waiting to taper my immune suppressant meds and give me my childhood shots (wiped out by chemo/transplant) until the sibling rivalry subsides.  I will probably have some degree of GvH for years to come.  Probably a master’s degree – MGvH.  Highly impressive on a resume.

My newest project that I made for the shindig 🙂

IMG_2115
I embroidered the date of my transplant on my dress

This report from the US Department of Health and Human Services (ah hem) has some amazing stats on bone marrow transplants by medical center, disease, and type of transplant , including how many performed, success rate, etc.

http://bloodcell.transplant.hrsa.gov/research/index.html

Here’s the promised video that I will cherish forever:

Posted by

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).

43 thoughts on “Party On

  1. Party On!! Congrats on the almost 1 year!

    Thanks for the absolute baddassery you have shown everyone over the past year and a half! (hope I used it right!)

    Like

  2. Ciao bellissima and thanks for sharing such joyful pictures…!!! A presto…

    Silvia Marjoram

    On Fri, Nov 29, 2013 at 1:11 PM, Joselyn’s Brawl with Shulman’s Syndrome &

    Like

  3. THANK YOU so much Jos for sending this…..the video is amazing and allowed me to feel like I was there continuing to root for YOU and celebrating your amazing HEROS!! Simply fantisimo!!! (You look adorable, as always….LOVE that your special date was embroidered on it!) Continued love and support, Kristi xo

    IPad – Kristi DeCinces

    >

    Like

  4. Hi JosGreat pictures of the partyThanks for sharingI loved the tattoos and the speechesyou looked fantasticso proud of you and all your familylots of love, Caryll

    Like

  5. Hi Jos, Sorry we missed your celebration. We know your mom and dad know how to throw a badass party. It was great to see your friends and family celebrating all of your triumphs. Now just to convince those pesky cells to get along. Love Lynn and Carolee

    Like

  6. I am one of the many, I am sure, unknown to you, but who has been reading your blog and praying and cheering you on! I am thrilled you have been celebrating how far you have come. May your days continue to be blessed with Love, Joy, and Play.
    Della in Mount Shasta ( A friend of your dad) 🙂

    Like

  7. Super duper congrats on your upcoming first year with many more to come! Your M & D’s speeches gave me a lump in my throat. You’re an amazing person Jos and we are so ecstatic about the success of your BMT. Soon enough those sibling cells will stop fighting and they’ll learn to get along, they just need to mature a little. Love you xxox

    Like

  8. Jos — you continue to amaze…as does your wonderful team
    thanks for sharing all of your ups, downs, highs, lows & those in-between moments.
    …now I have to go get another tissue!! 🙂

    Like

  9. Ahhhhmazing – that is what you are! I smiled at the pictures and now tears are streaming down my cheeks after watching the video. You are a true miracle with an awesome support system. Thank God for answered prayers! Blessings to you!!!

    Like

  10. Jos! Amazing! A defining moment of what true love and family is. So sorry I couldn’t come for three reasons: (1) I really wanted to experience the miracle moments with family; (2). I wanted to meet Leason 3 & 4 and your mom; (3) I wanted to show Jennifer and my support to you and Todd.
    The video was wonderful. God has blessed you and us with the gift of your character and life. Todd is in fact a husband I want to strive to emulate…it doesn’t get any better!

    Like

    1. Bill – you are the dearest! You were definitely missed at the celebration, but there will be many more 🙂 Todd and I couldn’t be happier to have you as a member of the family! I hope you feel better real soon! Love you! XO

      Like

  11. You guys are the best. The F*&^ing video was as heartfelt as the F*&^ing blog. What a great family — You all have tremendous courage. Fight on Joselyn. Beat UCLA

    Like

  12. This is a wonderful success story to a wonderful person who has shown me miracles do happen. Merry Christmas Shannon

    Sent from my iPhone

    >

    Like

  13. So special and thanks for sharing the pictures and videos with all of us! Love you!

    Gretchen Miller
    Leasing/Investments
    Transtar Commercial Real Estate Services
    2101 East Coast Highway #101
    Corona Del Mar, CA 92625
    949-813-6122 cell
    949-760-4013 work
    Fax: 888-717-2563
    gmiller@transtar.com
    DRE# 01071427

    Like

  14. Perfection! Your amazing parents, their kind and supportive friends, your hero of a brother, his adorable kids and wife,Todd of course, Todd’s great family, the yummy food, the cool house, the great weather, the spirit of celebration – mostly the joy of seeing you in that cute red dress that you made, smiling (and shedding a tear or two), standing there on your own two feet. I am so happy to have been able to share that wonderful day with you, and many more ahead. XOXOXO

    Like

  15. Dearest Mary Sue – You have been my rock through the past year and a half! You have done so much for me! Your thoughtfulness and generosity knows no limit. Having you at this celebration meant the world to me, as you do. XO

    Like

  16. Hi Joselyn:

    So sorry we missed your party, but it would have been a pretty long trek. The pictures look great, and you look fantastic. I love your outfit. You obviously haven’t lost your touch!

    It looks like everyone had a great time. I wish we could have been there for your celebration. We were thinking of you, as we always do.

    I am looking out the window at the snow right now, and it is -7 degrees. It is beautiful and cold.

    We love you and miss you. Give our best to your family.

    Love, Auntie Wendy and Uncle John

    Like

    1. Dear Auntie –
      We missed you at the celebration, but understand why you could not attend. I hope you are enjoying the MN winter wonderland! I miss and love you, too!

      Merry Christmas to all of you!
      Love, Jos XO

      Like

  17. Joselyn,

    I love your blog and the information shared. I was diagnosed Oct. 2012 with EF. It took almost 9 months for a diagnosis after being sent from one doctor to another across the city of Calgary, Alberta.

    EF had impacted my arms, legs, and hands. My mobility was significantly impacted. I went from this super active driven 41 year old to almost housebound. I refused to accept not being active and fought back to regain about 90 percent of my mobility. I was fortunate to finally get linked with a caring and responsive rheumatologist along with a very skilled physiotherapist. I am continuing to improve and I only had to leave work for four months.

    I thought I was on the home stretch to recovery when in May my platelets began dropping. In Oct 2013 they began to rebound I was thrilled. My excitement was short lived as things changed over the next six weeks with platelets dropping to 19 and then back up to 36. As well, there are now some issues with my red blood cells counts being higher than the norm. I am now awaiting a bone marrow biopsy Jan. 14, 2014.

    I am staying optimistic and I really appreciated the information you have shared through your blog. Like you, I will also do everything in my power to stay positive and get my health back.

    All the best,

    AF

    Like

    1. Wow! Angela! I have heard from very few who have been diagnosed with EF… It is such a rare disease. Sounds like you have gotten it well under control. What meds have you taken/are you taking?

      I’m glad you are having a bone marrow biopsy so you can get to the bottom of the blood/platelet counts. Keep me posted on your journey, and I’ll keep you in my thoughts and prayers 🙂 A positive attitude with some humor is KEY! So glad you are able to get something out of my blog.

      Let me know if you’d like to communicate via email.

      Happy Holidays,
      Joselyn

      Like

      1. Hi again, Angela –

        A couple more questions:
        How were you diagnosed with EF?
        Do your docs know or have a theory as to what caused it?
        How were you treated for it?

        I hope you’re having a great day!

        -Joselyn

        Like

Comment (pretty please!)

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s