It’s been small, but sturdy steps through each of these past days that end with my mom triumphantly crossing out another square date on my calendar. Each healthy X is one step closer to not paying attention so closely to what day it is.
I’m almost walking whole-footedly again. Two days ago I was hoping for my first steps. Yesterday I was hoping for functionality with my walker. Today I’m hoping I can get by mostly by hanging on to that IV pole. Tomorrow I hope these legs just straighten out for good. Sure, they’ve made determined progress in the physical therapy department, but they’re in my doghouse for another reason – my leg hair won’t fall out! If the hair on my head is going to fall out, it’s only fair that my leg hair, of all things, follows suit!
I even get a weightlifting belt for the outing. You can see the Peds BMT lobby. This is where I'm allowed to walk in addition to my room.
Balding for Reals
Speaking of hair, the many red nubbins that were clinging for life up top my head have now fallen out, leaving a sequence of red infrequent patches, but also exposing that my freckles continue even in high altitudes.
So now we’re lucky enough to just be dealing with normal bone marrow transplant maintenance stuff again – balancing my electrolytes and minerals, finding time in my day for a long-list of antibiotics and meds, keeping mouth sore pain at a minimum, and receiving near daily platelet and red blood cell transfusions (thank you, Red Cross!). I’d like to meet all the people I’m a conglomerate of a body. I imagine I have amassed quite the eclectic blood-producing assembly line by now.
Today we’re approaching that real waiting homestretch. First, we wait for any signs that by white blood cells are starting to grow. White blood cells are the only blood cells you can’t transfuse, so with mine sitting a big fat 0, any growth will be obvious. Before it shows in my numbers, we may first see signs in the form of my mouth sores healing and other such wonderful things.
Then, the big number we start to care about is neutrophils, a special type of white blood cell. (check out this info on measuring engraftment from Be The Match). Once I’ve hit 500 neutrophils for three days in the row, consider me a free woman from the hospital, that is if I’m not otherwise sick, can keep all my pills down, etc. Then it’s (hopefully) to the Gift of Life Transplant House I go until Day 100. I’ll get all sorts of daily transfusions outpatient at Mayo Clinic, plus there are several complications the docs watch for Day 30-100 that indicate the (ICK) Graft Versus Host Disease (GVHD), a reactive disease where your body realizes the donor cells are foreign, or vice versa. Let’s say that all together now, “Graft Versus Host Disease is gross. We don’t want it for Jenna.”
And there were also some big strides taken minus a walker by my supporters this weekend on my behalf during the Be The One Run® 5K Saturday around Lake Harriet in Minneapolis. The entire race raised nearly $145,000 for Be The Match. They braved what was reported by all as POURING (yes, worthy of capital letters) rain. Thank you so much to all those who formed teams or ran as an individual on my behalf.
My dad’s wife Cindy formed a team with coworkers at Thomson Reuters that raised $4000! Thomson Reuters also sponsored mile number two. My company, Weber Shandwick, sponsored mile 1 to my pleasant surprise.
Padilla Speer Beardsley, the Minneapolis public relations firm where I interned after college, had a fabulous team and raised more than $1000, mostly in bake sale goods and coffee sales at the office (that sounds about right if I do harken back to my days of well-fed-ness at the office).
Team Jenna from Padilla Speer Beardsley included (not necessarily in this photo): Laudan Sakizadeh, Whitney Mares, Sarah Pierce, Catherine (Claeys) Scott, Tameka Davis, Nick Banovetz, Tiffany Jungers, Kurt Stafki and Kirsten Lesak-Greenberg
Jimmy’s brother Franz and sister Mary both ran. Franz hates running but signed up anyway.
I must point out that three of the people that ran in support of me ended up in the top 20. Need I remind you that I always came in first in the mile in middle and high school? (Yes, there were only 25 girls in our grade) Way to go, Jay, Kurt and Mary. I only surround myself with good people. I bet it all looked something like this.
And in the spirit, I can’t conclude without calling attention to Dr. Arndt’s husband, who this weekend shaved what I hear were long, luxurious locks as a fundraiser for the St. Baldrick’s Foundation, which funds children’s cancer research. He raised over $5,000 – so his title “the golden fleece” must be well earned.
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