Saturday, March 11, 2017

getting hemoglobin
One night last week, I was up late distractedly working and concentrating on some non-profit things, when a little Facebook private message popped up in the corner of my screen. My fingers continued typing what I was working on, but I let my eyes fall to the message and skim the gist of it. It was another cancer mom. Not someone I knew, or with whom I had had previous correspondence. My fingers stopped, and I gave a little sad sigh at the thought of all the cancer moms that very night sitting at their computers in those late hours, just desperately searching the internet for a treatment, sniffing out some hope for their child. Countless nights over the last five years I have done, and still do, the same. I’ve been a little disenchanted with Facebook lately. Between politics and football, it’s just been so acidic these last several months with people unable to take a joke, or unable to let a comment roll on by, or unable to hold a mirror up and say to themselves, “that hurt, but yep, you’re right.” So, when this mother wrote me about Eli’s journey, looking for a more sure-footed path for their own journey, I remembered why I stay active on Facebook, and what a life-line it can be.
In PICU after allergic reaction to platelets

Eli was admitted to the Pediatric ICU at Huntsville yesterday after having an anaphylactic reaction to a platelet transfusion. It was bad enough, but could have been much worse. He is always pre-medicated before any transfusion of blood products, so that precaution was taken. Blood products are always irradiated, but I think I am understanding that Huntsville does not “wash” like St. Jude - Memphis does (if I’m remembering right). Plus, because his platelets were “critically low” per blood work Friday morning, the doctor did not cross-match his platelet type because it would have taken two days to get it in. So, he received a universal type, with pre-medication. Seemed reasonable. Well, his body is pretty picky at this point, and was not accommodating, even flared up a second reaction a couple of ours later in ICU. But, he is better today, and came home this evening. He also had to have a red blood cell transfusion last Friday, only after one week on the new chemo, and we expect him to become neutropenic in the next couple of days (thank goodness for Spring Break!). So, this first round, as we expected has been hard on his body. It is a strong dose, trying to hit the cancer a little hard up front, but there is always a consequence of each decision. I’m always thankful for the people that take an oath, and that we live in an age where transfusions are possible.

Eli and Michael, the stripe guy
Eli and Nikky, the vinyl gal
Other than those two “events”, Eli has seemed to feel pretty good, maybe a little more fatigued than he had been on the other chemo, but overall he has been pretty normal. I was surprised when he needed the red blood cells, never suspected that, and the only reason I thought he might need a platelet transfusion on Friday was because Tuesdays blood work kind of gave us a heads up. We have had sickness in the house. The oldest. Not for sure it was the flu. If it was, it was mild in intensity compared to others I read about, but it did take several days to get over it. She was so good to quarantine, and so far, no one else has shown any signs. Thank goodness, since this is the time in Eli’s cycle when he will be unprotected.

The most exciting thing that we have been working on (outside of trying to get the car shows organized, and other non-profit stuff that consumes me), is that the cosmetic transformation of Eli’s Mustang is finished. I think I’ve mentioned that the car needed to be re-striped, so we took advantage of that need to let Eli have a heavy hand in the design. However, we were limited by some things that kind of automatically narrowed our choices in color and design (i.e., we had already made some purchases for
Eli and Jeremy, the photog
parts under the hood that are a specific blue; we were having vinyl cut for the stripes/graphic instead of painting them on, so we were limited to the colors available; we were not going to paint the car, so it stayed black; there were colors Eli just didn’t like just because he didn’t like them; we were limited in our “design” skill and tools when preparing the horse graphic; we wanted the stripes to go back in the same place). So, after all of those considerations, we finally had the design finalized, and vinyl cut by a girl at Railroad Bazaar, and we thought she was going to quit on us a couple of times, ha! She was very nervous about the horse, but she was very particular, and handled our neurosis politely. Then a guy from the Limestone County Mustang Club with extraordinary talent did the striping and graphic application for us, and added the pedestal wing (our stuff was child’s play for him, and he also handled our neuroses politely). We’ve got one change yet to make. I made the cancer ribbon too big, it is distracting, so we are going to make that a lot smaller. With Eli’s chemo change, his hair will be falling out soon, as in I can’t believe it hasn’t already, so I really wanted to get pictures with the new look of the car before that started happening. I grabbed one of the coolest automotive photographers, and was able to quickly set up a photo shoot at a unique location. I’m sharing a sneak peak from my cell phone, but I can’t wait to share what he did.

Our Spring Break is this week, and the kids would love to go somewhere, but in the next breath they say how much they are glad we aren’t going anywhere. So, I’m thinking they will be glad for a true break. Eli will have another routine blood work check on Tuesday, praying his body will stay strong to finish this cycle.

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