Wednesday, July 29, 2015

Getting blood transfusion.
Eli had an unexpected long day today. We had an appointment with our onc at MD Anderson to do routine blood work late yesterday afternoon, and since he was feeling so much better, I really didn't think much of it and even started to think, eh, maybe we don't actually need to see the oncologist every week... well that was a fleeting thought after blood work that the onc has now had time to follow shows his hemoglobin trending down, and dropped into the transfusion zone. So, Eli had to be at MDA for a blood transfusion at 8 a.m. today (thank you to those that donate blood!). And, what made the day long was that we already had an upper GI scope scheduled for today at Memorial Hermann to investigate if the pain in his side was an ulcer or something. So, thankfully, we found out that his blood levels were low, so they bumped the scope to the afternoon (was at 5:30 a.m.) and did the transfusion first at MDA, then straight to the scope at Memorial Hermann (yes, two different parking garages, and we even had to come back to MDA when we were done at Hermann for MDA to deaccess his port b/c MH couldn't figure out the needle clip. So three garage trips today. Thankfully, we were able to get one validated, such a pain). He was NPO (no food or drink) because of the anesthesia, which means that I was NPO. So, this was our first day to go into the city in the mix of morning traffic, and come home in the mix afternoon traffic. After stops for gas, toilet paper, and pizza to bring home so that I could sit down, we didn't get home until 6:30 p.m. Thankfully, the transfusion went well (he has had allergic reactions in the past), and
Keeping warm under the coolest blanket.
 his stomach and all parts connected within the scope of the scope looked normal and healthy. So, though the pain remains a mystery, we know his stomach is not an issue. Knowing what something is not, is information, too. Also a mystery is why his hemoglobin is dropping. All of his other numbers were good. So, why that. Is it because he has not fully recovered nutritionally from his weeks of not eating and he was low on iron. (He has gained a pound by the way since we started him on the appetite stimulant.) Or is it the methotrexate, and if it is methotrexate, then how is the methotrexate getting to his blood system. I'm tired of befuddling the world-class medical industry. Those of you that have been with us from the beginning, do you
Trash tack-out night.
 remember after Eli got his shunt, there was a problem, can't remember now what led to us knowing there was a problem, but the neurosurgeon had to go back in and found that the patch had a hole in it. He said he had never seen that before and wished he had taken pictures of it to show his colleagues because they wouldn't believe him. Then there is the issue of subtyping Eli's tumor. Huge leaps toward learning about this disease and separating it into subtypes which makes for more appropriate treatment. There are four groups basically, and we were told, "Well, Eli's tumor tissue looks like this one, but acts like this other one." Several other things through treatment originally, then the biggie with the NOAH cells being something that "no one anywhere in the world has ever seen." I hardly blink now, when a peer-perceived genius doctor says "well, it's not supposed to happen." Well, it's Eli, so documented biological expectations don't really apply to him. And, that has been true on the flip-side as well. I really wish you could see the faces of new doctors that we meet when they ask me for his history. They understand the significance of him walking into the room with his full-head of hair, sitting down on the table under his own strength, answering their questions, even the significance of him being alive with any kind of quality of life a year and a half after relapse. So, I don't know, I'm just envious of those cancer kids for which they have a plan that works, there are little surprises, and pray to see that for this one day. Medulloblastoma is the most common brain tumor, yet the one they know the least about. Anyway, enough of that. It was a long day, we didn't make it to mid-week worship, but Eli was feeling good tonight, better than me. He has the last treatment of this cycle tomorrow morning, then we plan to pack up and head home for the week.

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