Saturday, March 29, 2014

War Eagle! This was waiting for Eli on the table when we got
home Thursday night all wrapped up in Auburn wrapping
paper. Signed by Coach Malzahn and some of the players.
I’m on a kick tonight after Eli’s chemo treatment today. Oh… first things, yes, we arrived back from Florida last night about 2130 hours. We tossed our stuff into the pile that is now our home, and went to bed so that Vic could get up in the middle of the night to go to work in time to get off in time to get Caleb who was coming with me and Eli for Eli’s chemo treatment. Since it is spring break, he did not have school, so he tagged along and did fine until Vic could get him at 1400 hours. So, Eli, Caleb and I were at the St. Jude clinic in Huntsville today for Eli’s third cycle (two treatments each month make up the one cycle) of the COG protocol which includes bevacizumab, irinotecan, and temozolomide. His ANC was the lowest it has been since we started in January, so this is the first time they have had to reduce the dosage of the irinotecan at the beginning of a cycle. (sigh) Just a sign that his little body is getting up slower from the mat to take the next abusive hit. That will just slowly keep happening until they have reduced it so much that he no
Just hanging out getting chemo. That's the apple Caleb didn't
eat, and child life services gave Eli the lego to do. He's got his
juice with him, but I have to "remind" him to take a drink.
 longer gets the irinotecan. It worries me because his last MRI was so surprisingly good that I hate for anything to get messed with. It’s kind of like “hold that pose!” It also makes me nervous for school that we were so excited about starting back to on Monday. The doc said it didn’t matter, to send him on - but I question why, to her, it doesn’t matter. It doesn’t matter because even with an ANC of 996, he will be fine, or it doesn’t matter because it doesn’t matter. And, I feel like we have let the holistic effort slip. Vic and I are not synergetic in that effort much any more beyond juicing, and just in general eating organically when convenient and exposing ourselves to less chemicals in as many ways as we can logically, and financially. So, anything, nutritionally that is easy to do, he’s good with, but while Eli is on chemo he is not going to be open to the supplements that I think we need to continue. He doesn’t look into any of it on his own, and he is not going to take my word for any of it either, and he doesn’t see the point in continuing to see the holistic doctor. I just don’t
Just a left over beach pic to share.
 have the brain capacity to figure out nutritionally what are the “Must-Haves” for medulloblastoma. The myriad articles and blogs I see every day claiming  to be “nature’s cure for cancer” or, not even “cure,” just nature’s “defense” is confusing and frustrating. Even if what they say is true, I don’t understand it and can’t cull what is not true. This reading and reading about things that I don’t even understand in the first place, from sources I do not trust (which I am very, very careful about. I even got into an email argument with an essential oils blogger because I asked her for her top three choices of essential oil producers that she did not receive advertising dollars, or payment, from. She claimed for many posts to be researching the best of the best and gave details of at least 12 producers that she had “talked to”, but she found this one, which happen to pay her for ads, to be the best of all of those. Ok, so give me the second-best and
At the naval aviation museum.
third-best - she wouldn’t do it. Finally stopped responding. P.S., please do not send me any essential oil information, thank you for your thoughts, but I’m doing my own independent study), is just sending me spiraling intellectually and then I end up with no plan with time slipping. It’s like the whitewater raft down the middle disaster happening everyday! I just need the top things. I need to know what are the Must-Do for Immunity Recovery from chemo; the Must-Do for brain tissue repair; the Must-Do for organ repair; the Must-Do for cancer recoil (and when I say that “I need to know” I’m not asking for any responses. I’m just sharing what I am searching for when I’m perusing. I guarantee, I have heard about what you are going to send me) then I’ve got to move on to other issues like house woes that make me just want to lay down and put a pillow over my head; visiting my mom who has dementia so time with her even knowing who we are is slipping; school and general childhood pursuits for all the kids so that when they look back on their childhood they have something to remember about it besides CANCER! I just really feel like we are missing
Practicing his flying skills.
 something with Eli, that we are not doing “all” we can do because I can’t figure out what “all” is without wasting time and money on the things that are not “all.” When I look at him, I can’t tell what direction we are going, and it feels out of control and is suffocating. So, that stressful rant is due to Eli’s counts being lower than usual, which is not really that big of a deal to the doc’s (again, why is it not a big deal?). But it was just a little nudge back to reality … a jolting yank to remind us how precious this time with him is. I need a vacation…. wait… I just got back from vacation. So, chemo in general went well today. St. Jude is having to ship the oral chemo that he gets at the beginning of a cycle because there was some insurance issues with getting it here any more. So, it is a day late, but as long as we start it tomorrow or Sunday, I think that is acceptable. Eli’s ears have been bothering him in that he has had some ringing, thought he had water in his ear, and several times the
At the zoo.
 clinic doc has told me she couldn’t see his ear drum b/c of the wax. Radiation dries out the natural wax so it doesn’t stay moist enough to discharge itself. I’m suppose to be doing drops, but I forget (another one of those “all” things), so I noticed that he was saying “huh?” a little more, so I stopped at the pediatrician at closing and sweet Dr. Brassert and his nurse Meghan (?) flushed and cleaned them out. The only reason I didn’t gag was because I would have been embarrassed, and Eli was crying the hole time like he was being slaughtered. How embarrassing for me to be gagging and him to be crying over dealing with ear wax considering what we have both seen and done. Pitiful. From one ear, she flushed a chunk the size of my pinky toenail, and he pulled out thick, string of wax that was longer than my pinky toe. Since he was crying, he wouldn’t admit until later in the evening that he could actually hear better. So, I have since bought the things I need for that maintenance. Time will tell if it gets used (as part of "all"). I’m so sorry for the venting. If I had more time, I wish I could have at least made it creatively valuable. But, I didn’t open the gates until
I'm in this picture, too!
 midnight and I’ve got a girl scout workshop at 9, so I couldn’t be picky if I wanted to finish. So, if you made it this far, I’m sorry, but thank you.

No comments:

Post a Comment

Note: Only a member of this blog may post a comment.