Myelofibrosis–A Personal Journey

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Hip Hip Hooray! It’s New Stem Cell Day!

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Superman!

Today is R’s “re-birthday.” The first donor cells went into his body at 5:20 pm. Halla-freakin-lujah. They arrived at SeaTac around noon, all the way from Germany. It’s interesting how many stem cell donors are from Germany. Apparently, it’s part of the cultural norm to sign up. Armed services members are strongly encouraged to add their names to the registry. Thank you, donor!

I wrote the donor a letter which will be delivered to him through the donor registry organization. I wasn’t allowed to put any identifiable information in it. At one year, we can request his info and if he gives his permission, we can contact him directly and vice versa. We’d love to meet him! A trip to Germany? Oh yeah!

I want him to know whose life he’s saving. I want him to know R is a man of great character, and that he is a role model for all who know him. He’s a hard worker, honest, compassionate, gentle, monumentally patient, a beautiful skier, a car mechanic and proud owner of 2 antique cars, a former elementary school teacher and assistant principal, an excellent Swedish-pancake maker, a master landscape designer, a camping and hiking expert, a tech whiz and the best husband, father, brother and grandfather a person could have. This is no ordinary human. He is Superman!

We’re all warriors now!

I fell in love with him at 14, married him at barely 21 and can’t imagine life without him, because, he is in me and I am in him. We think the same thoughts at the same time. We share sleep patterns- when he’s having lousy sleep, I am, too. We’ve been through major trauma together and held each other up. My health has been no picnic. I’ve had more surgeries than can be counted on 2 hands, plus, I suffered a mini-stroke in my right eye (yes a blood clot) that led to permanent blindness. My mental health has been iffy at times. Through everything, he has loved me and protected me fiercely.

I owe him everything including our 3 children who adore him!

Our kids. All here today to celebrate the chance at life.
The gift.

Today is a new start at life. The hard part comes next. He’ll be beyond susceptible to infection. The most innocuous thing could kill him. The donor cells may attack his organs. His remaining cells may fight the donor cells. He’ll experience fatigue beyond imagination. He could have a host of other ailments or even follow-on cancers because his immune system won’t be up to snuff.

The key to my heart I gave to him when I was 15 years old.

I say all this so you understand the catch 22 we’re in. This is his ONLY chance at life but it could end his life. But not R. He is determined and has so much to live for. He’s been a warrior and will continue the brave fight. Oh how I admire him!

Your love and support will keep him going when the going feels nearly impossible.

Thank you for being there.

Re-birthday boy and carrot cake from his mom’s recipe.
A homemade re-birthday gift I made with tiles a good friend brought to us from Spain.

8 responses to “Hip Hip Hooray! It’s New Stem Cell Day!”

  1. tiorene@comcast.net Avatar
    tiorene@comcast.net

    Congratulations! It finally happened! We rejoice at this glorious day and a new beginning for Russ and the rest of the family. We too are lucky to have Russ in our lives and look forward to many happy times together in the future! Hang in there! We love you all!

    Rene, Betty, Melanie, and Farley & Lola (and baby Vincent too!)

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    1. dianajnoble Avatar

      Thank you. Your love and support of your amazing brother-in-law means a lot to both of us.

      Like

  2. dreamerautomatic88f83503a7 Avatar
    dreamerautomatic88f83503a7

    🙏🏼🙏🏼🙏🏼

    Liked by 1 person

  3. janetbishop12 Avatar
    janetbishop12

    Thank you Diana 💗this is so beautifully written, shares very important information and tells a lovely story! we love you, Russ and can’t wait to see you!!

    Like

    1. dianajnoble Avatar

      R is still eating your lemon bars. I froze them in packets of 2 and bringing them to the hospital each day. His love of citrus is even more pronounced lately.

      Like

  4. Marcia Dillon Avatar
    Marcia Dillon

    Keeping you in our thoughts and prayers. My husband’s transplant at UW was 8 years ago, but reading your post makes it feel like yesterday. Remembering so well that joy and relief that came on Cell Day, but also the knowledge of the challenges of the road ahead. Wonderful that your children were there—ours were living out of town and unable to be there, and I felt very alone.
    We communicated with his donor at the one year mark but never heard back. We knew he was 21 at the time of donation (same age as our daughter then) and living in the U.S. Many months later our daughter sent him a heartfelt email about how he was a hero to her, to have saved her dad’s life and for some day be able to walk her down the aisle. He finally responded and there were some great communications between him and my husband. To date we haven’t had a chance to meet, but still hoping some day. I hope that you’ll have the chance to meet your husband’s donor.

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    1. dianajnoble Avatar

      Thank you for sharing your own story. It’s good to hear from others who’ve gone through the same experience.

      Like

  5. sensationally8c414eef60 Avatar
    sensationally8c414eef60

    So excited for you!!! It was “the first day of the rest of your life!”

    Liked by 1 person

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