Home » AL Amyloidosis » Post Stem Cell Transplant Day +3

Post Stem Cell Transplant Day +3

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On August 2nd, Josh received six bags of new stem cells. The stem cells arrived to his room in this frozen canister and were injected through his central line. The stem cells are mixed with a chemical that smells like creamed corn. The smell is excreted through the breath and the skin. It is pungent and quite awful. We will never eat creamed corn again. The day of the stem cell transplant went smoothly, there can be side effects, but Josh felt sufficiently awful that he was drugged up and knocked out throughout most of the procedure. Josh felt miserable and although it was his new “birthday”it sucked.

On August 3rd, Josh’s neutrophils bumped up to 3,400. On August 4th, his neutrophils were 1,400, they will soon drop to 0. Neutrophils are a type of white blood cell. There are many types of white blood cells, whose purpose is to fight infections in our bodies. I have read that neutrophils are the most important type of white blood cell. A normal healthy person has a white blood cell count between 2,500-6,000.  When the neutrophil count drops below 1,000, it is called neutropenia, which means you are at serious risk of infection. In the next few days Josh’s neutrophils will drop to 0. He will remain in the hospital until his neutrophils rise between 500-1,000. Neutrophils correlate with energy, well-being, and general health. He will be bottoming out soon. It already sucks, but will get worse.

As his neutrophils drop and his symptoms increase it is hard for him to focus on activities for any length of time, which is frustrating for him. He spent three days finishing a maze for our oldest, but was determined to finish it.

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The past three mornings Josh awakes about 4am and vomits for a couple hours, the nurses and doctors try to get his symptoms under control through anti-nausea medication. He then is usually knocked out by the medicine and sleeps a couple of hours. We are hoping the strict regimen of multiple anti-nausea medicines throughout the day will keep his vomiting at bay. He has walked two miles every day since he has been in the hospital, which is pretty remarkable given the abdominal pain, nausea, and vomiting. Also, I haven’t witnessed much vomiting, it feels as if he holds it together while I’m around to not upset me and then vomits immediately after I leave or before I arrive. Bonnie, Jerry, and I rotate shifts. Typically I am there all day until I pick the girls up from camp and then come home have dinner with the kids, put them to bed, and return to the hospital for a couple of hours. Next week I will be there 9-5pm, and I will sleep there over the weekend.

It is hard to keep spirits high when you feel worse than you ever felt and you know the worst is yet to come. But Josh is convinced he will keep walking, keep showering, keep drawing mazes, playing games, and eventually his blood counts will rebound. If he has an ounce of energy he sits in a chair rather than lying in bed.

Josh is the best. He sends home gifts and cards to the kids every day.

Words to describe our past couple of weeks and then I’m going to sleep.

Stranger Things (great Netflix show – Xfiles meets Stand By Me), Yahtzee, step counts, laps through the halls, nurses, a koala maze, FaceTime, dot-to-dot, bananagrams, soup, hospital food, FRIENDS, kindness, hope, heart break, tears, hospital bed cuddles, zombie eye (hemoraged eye from vomiting), rock climbing camp, adventure camp, rock star nanny, visits from friends from across the country, family, best friend who sat in the chair with my girls as they fell asleep, stem cells, sci-fi, crazy, surreal, best friends, fluorescent lights, cream of corn, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, LOVE, RESILIENCE.

Our people have cradled us in love and I feel loved by people from across the country and different ages and stages. A strange term, but the image of me cradled literally popped in my head as I drove to the hospital this morning. We are such homebodies, I worried if we had people other than each other and we have people, oodles of them. Who knew two hermits had so many friends. I love you all.

I can’t wait for my family to be under the same roof. It sucks for him because he feels awful, but I feel happy if he is feeling okay and I can curl up next to him in his hospital bed watching the iPad and gossiping about life even if it smells like nasty corn, I’m in a gown, and can’t breathe fresh air. For me home is where Josh is, he is my home and I’m happy when I’m with him, even in solitary confinement. I’m so lucky to have a husband that has the power to make me happy in prison. The kids are my home too, which leaves me split in two. Currently, our home is a bit broken, my heart is a bit broken (all of our hearts are) since we are split in multiple places and the kids and Josh can’t be under the same roof.

The babies and I lit candles tonight and asked that Josh feel better and come home soon. We miss him so much in our physical home, but I will see him first thing in the morning.

THANKS FOR THE LOVE, I AM GRATEFUL. XO

 

 

2 thoughts on “Post Stem Cell Transplant Day +3

  1. Justine: my son Jim and Josh were great friends in grade school, Carlow Campus School, and Bonnie and I remain friends. My family sends prayers to you and Josh and your beautiful family. You are an incredible couple. Josh is such an inspiration to those who know him and will inspire and encourage so many more to come. Love and warm thoughts to you both. — Jan Mulvihill

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