Myelofibrosis–A Personal Journey

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A Very Different Christmas

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They call the IV pole a “tree.” This one’s loaded!

Where to start? R’s had some ups and downs. His stomach cramps became absolutely unbearable, making it impossible to sleep. The first 10 days he could get 2 hours at a time up to 4-5 hours a night. For the last week, it’s been maybe been an hour and a half IN TOTAL.

Another contributing factor is total body ache—he cannot get comfortable. He has a foam topper for the mattress, but still, lying in bed 23 hours a day for 20 days takes its toll. They brought him a different chair today with excellent back support. He’s sitting in it right now and loves it. He said he’s dreaming of the homey spaces at the house to walk around and lots of seating choices. Ahhh-the simple pleasures.

R in the new chair with his warrior self looking on.

Blood counts are low! Red blood cells, while important, aren’t the most important. It’s the white blood cells, and specifically, the neutrophils.

R has almost NONE of these things and the neutrophils are basically non-existent.

White blood cells, of which neutrophils are a part, are your immune system. They fight infection. When the neutrophils start climbing, that tells the doctors the donor cells are “engrafting,” or “sticking” in the marrow and doing their job. That’s the whole point. We need the donor cells to kick butt, completely take over and eradicate the effing cancer.

He is the most vulnerable to infection as he’ll ever be. Someday he’ll have to get all his childhood vaccinations again. They don’t transfer over from the donor.

I’m afraid Christmas this year was no more than another day in the hospital; just the two of us. His room is all decked out with lights and decorations, but neither of us felt the spirit of the holiday. Of course, we were happy to be together in the quiet. And that was more than enough.

I wrote a letter to R’s donor telling him what kind of person his cells are saving. A few days ago, he wrote back!

From R’s donor.

The donor cells were the greatest gift anyone could give. 2 of our best (young) family friends added themselves to the stem cell registry in R’s honor. Warms our hearts and fills us with gratitude and admiration. 🦋

The hair is coming out fast and furious. We’ll shave it soon.

And now for the ups part of this ups and downs post. R has been feeling better the past couple of days. His intense headaches are much better (caffeine pills!) and his cramps are mild. Hallelujah! He’s still fighting an infection so the antibiotics continue. Wiping out the infection is crucial. With no immune system, the slightest infection could be fatal.

He gets a little sign to put on his door for every mile he walks.

This is a long post so I’ll skip the love story of PERSISTENT GIRL PURSUES CLUELESS YOUNG MAN. 😆 I’ll continue next time.

We wish you a happy new year filled with good health (the foundation for everything else).

3 responses to “A Very Different Christmas”

  1. delicatelyfacee018192359 Avatar
    delicatelyfacee018192359

    Have a happy holiday as best you can!!!

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  2. elray65 Avatar
    elray65

    sending you both lots of virtual love , support and positivity- go grafting! Wow- the letter from the donor is so powerful! I had instant tears from his kind actions and words!

    I am newly diagnosed and your posts of this process is very helpful – thank you !

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    1. dianajnoble Avatar

      I’m so glad my posts help. Sometimes I think I’m posting too often. Best wishes to you on this challenging but doable journey.

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