Home » AL Amyloidosis » Living Life In Incomplete Sentences

Living Life In Incomplete Sentences

ANC graph

Today Josh is six days post transplant. Last night he was up sick all night. He did well this morning and then had extreme abdominal cramping this afternoon. His white blood cell count was 24.  Josh and his dad drew a graph this evening of the progression of Josh’s ANC levels. He is pretty close to rock bottom, but the good news is from down there, there is no where to go but up. We hope his blood count rises quickly.

For Josh, there is the expected nausea, vomiting, diarrhea that he knew came with intense chemo therapy, but for him the worst part has been the loss of focus. He literally is trapped in a room and cannot focus on anything for more than five minutes. He gets a lot accomplished in five minute bursts, but he constantly must change positions and switch activities. Josh, who could win medals for watching stupid movies over and over for hours on end, has not sat through a single movie while trapped in a room on the transplant floor of PSL.

Wake-up. Sick. Get Medicine. Color. Pace. Draw Maze for kids. Dot-to-Dot. Sports Center. Write card to kids. Olympics. Nap. Walk. Sit. Eat. Play Yahtzee. Draw. Walk. Play Cribbage. Pace. Maze. Dot-to-Dot. Eat Soup. Walk. Rest.

Despite his inability to focus he has forced himself to walk 2 miles every day and he created this beautiful platypus maze for our middle daughter.

Palatypus maze

Nine days into the hospital stay, it still feels like we are living in an alternative universe. Before SCT (stem cell transplant), I worried about what after school activities I should sign my kids up for, I wasn’t cognizant of this reality. Truth, there are always people suffering and struggling on this planet. Truth you never know anyone’s story. These truths along with many others are burned into me. It still feels more science fiction than reality, an absolute surreal shift, plucked out of our privileged lives and placed on a foreign planet. We are stuck here until Josh’s ANC reaches 500, for at least another week.

Josh is working harder than he has ever worked not to get a promotion or an award, but to get back home. He is fighting for everything that I (we) have always taken for granted. When he gets home, it will mean everything.

This is painful. It sucks. I cry. I smile. I cry again. I smile. I cry. I love him. Love gives us super powers. I discovered this after birthing children, I’m seeing it again, we are super-human, not alien, but loving humans have heroic strength, which means when pushed we all have super powers.

THANKS FOR THE PRAYERS, VIBES, AND LOVE, PLEASE KEEP THEM COMING.

We keep on trucking, hopefully, out of the transplant ward soon.

XO

Justine

 

 

 

3 thoughts on “Living Life In Incomplete Sentences

  1. Josh and Justine…You are truly AMAZING! You give strength and love to us all. I am boomeranging it right back to you and your loved ones. Always my best very often each day to you. Mimi

  2. Your posts are amazing, Justine. Something strikes me when I read them: That no one would choose this rocky road, god knows, but for your passion and depth of feeling and caring and loving, I envy. And your gift of writing all this down, and to us, I am hugely grateful. I do pray for Josh to get well. In the shower, and grocery store, and riding a horse, I pray for him. I believe all this connection works. Your posts do! Hug Josh from Dave and me! nan

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