Sunday, July 2, 2017

This is Eli when he left Atlanta on Friday.
June 25:We had a lazy Friday watching for storms to roll in after getting back late Thursday from Atlanta. Saturday, we slept in, then hit a car show before starting to pack everybody up for Bible camp. Well, everybody but me and Eli. Instead of packing for camp like the other kids, he packed for two fun-filled days of sedation and MRIs. We followed the kids to camp to hang out a bit before coming to Atlanta tonight. He doesn't seem bothered by missing camp with the others (he wasn't going to go full time any way, I was just going to take him over a couple of times during the day), hasn't seemed to care either way. The thought bothered me more than him, I guess. We will be admitted tomorrow afternoon for in-patient so that he can receive some fluids to help his kidneys a bit with handling the contrast used for imaging. They will do brain tomorrow, then do the same thing Tuesday for the
spine. Eli seemed tired yesterday, but went to church this morning and walked around camp today, and has been in a good mood. He hasn't had any more symptoms yet, been doing good. Thanks you so much for the prayers that are supporting us.

June 26:
Same song... what verse are we on? Another day, another hospital room. It is big though, and everybody has been very nice, and attentive. They charge cash to bring the parent's meal with the patient's meal, and I don't carry cash, so I had to leave Eli a few minutes to go to the cafeteria. It is weird to walk familiar halls of a place you've never been. Today was just fluids, and creating his paper

trail, which yielded the find that he needed a hemoglobin transfusion (uuugghhh!!). Chemo - the gift that keeps on taking!! So, he's getting that now. An EEG in the morning, then MRI midmorning or lunchtime. I really like Dr. Aguilera so far. We talked again today about a couple of things - one being a DNR, so that's always a fun conversation, but mainly she wanted to make sure she was writing it up according to our wishes - but she told me that she had done her homework on Eli, had read his history, which is in volumes by now, and was already familiar with him under the name "patient number two" during trial briefings with Dr. Johnson, but she wasn't sure what to expect when she met him. Then when she walked in
the room, and he was sitting on the bed/table playing a video game, got off the table to walk across the room for her, answered her questions (well, within his personality answered her questions), she said, "He is just amazing. What I read, and what I see, it just doesn't match, and I think you are doing a wonderful job with your decision-making." So, I like her, ha! But, she seems like a problem-solver, and that's what we need someone to consider Eli, not his chart. She has started the process of getting some of his tissue to test, and that's not an easy process, we already know. These guys and gals that work in the paper/red tape end of it all just don't realize how important their job is to someone's life on the other end. So, praying for providential intervention in the expediency of the process. Thank you as always, have a restful night!
June 27:
Someone shared a little social media game where your last text is the title of your autobiography. I checked my phone, and mine would be "Ain't Happenin'" Wow, how perfect! I had texted Vic earlier this morning that they were not able to get Eli in for an MRI today because there were too many emergency MRIs. That is very disappointing for several 
reasons, but I would not begrudge anyone an emergency MRI - been there, needed that. But that does give us another day of fluids to increase his renal function which we have learned is at 50% naturally right now. This means the MRI folk would not agree to contrast for the MRI if his kidneys can't flush it appropriately, so we risk not seeing everything that is there without contrast. Hopefully, this extra day is yet again a providential touch to get Eli what he needs when he needs it. He is a bit perkier today, with the bolus of blood last night, and he had a little respiratory treatment earlier (just a routine dose of pentamidine that we usually get through the port, but they do it as a mist here) that included albuterol, which, in my
Neurology exam
 experience, winds them up a bit. We also met with the neurologist, just for a physical assessment for him to meet Eli, and prepare to arrange the EEG. He kept asking me (in different ways) was I sure that he had leptomeningeal disease, someone confirmed this to me with imaging? Yes, extensive, "global" progression. He said, "Ok, hmmm, it's just that... well, we've seen and dealt with a lot of kids with leptomeningeal metastases, a lot of medullo, and he's just not... well, just from what I've been told about him, I would expect him to be a lot sicker than he appears to be, so I will be interested to see his images." Yep, that's Eli. So, we are hanging out at CHOA (?), enjoying hospital amenities. Thankfully, I've been doing this long enough to have with me an emergency Lego set, and the gift shop had Hot Wheels, and chocolate, so we are good. He is in a good mood, has been chuckling at Spongebob, and been sassy with me ("Don't you understand the concept of BAG ONE and BAG TWO by now!" - I was trying to help organize the Legoes for building). The EEG prep wasn't too fun, getting his head scrubbed for the little sensors, but he barely flinched. The tech said that she wanted to use him as a model for a video of the prep, ha! Then he had to blow on a pinwheel, and have a big strob light in his face for a few minutes. That's as
Brushing our teeth with our tag-a-long
 difficult as it got today. Well, that and worry that we still haven't had our MRI so that we can get started with some kind of treatment. Please say a prayer for Nio's family, he passed away a couple of days ago from relapse.
June 28:
The name of our autobiography today is “Psych!” Eli’s MRI was scheduled for 3 p.m., ugh! That’s NPO, nil per os, latin for “nothing by mouth,” all day (yes, I had to google it). Thanks to all the fluids, and extra blood, he was cleared for the contrast solution, and was taken back for sedation on time - not general anesthesia, which, after all these years, I learned today are two different things (I know!! But, I never claimed to understand any of it!). I went back with him so that he sees me when he drifts off to sleep via the meds. Their bodies really fight that forced sleep, and I knew that, I’d seen him move a bit at first all the times before, but this time, he was really moving a lot, and his checks were flushing (to be fair, his cheeks flush all the time, either when his body is being invaded, or when somebody talks to him, just ask the St. Jude clinic nurses, he’s a tough read) and I said something to them about watching his cheeks, and him really moving a lot, and they said their usual, “it’s normal, he’ll settle down… come on mom, let’s show you the way out.”
And, it wasn’t that unusual, I knew it, and they were very attentive, a doctor and nurse in there with him, so I settled, too, and went to the cafeteria to finally get lunch (I don’t mind eating breakfast in front of him because he doesn’t like to eat in the mornings anyway, but I won’t eat lunch in front of him when he’s NPO). It’s an over three-hour scan, so I took it back to the room. I was barely into my mac-n-cheese, when the doctor called me that they brought him out. He would not stop the moving, and he wouldn’t keep his airway open on his own (this is what learned, GA is when they intubate them in a deeper sleep, and this is what we’ve done in the past, but they had used the sedation as a kind of bridge to GA). So, AAAAHHHHH!!!! The waiting, the NPO, all for nothing except that it changed the setting on his programmable shunt and we can’t get anyone to change it until in the morning. Ugh! Again!! The plan right now, is that the scan now be split into two sessions, with no sedation or anesthesia. But, again, we wait for a slot tomorrow, and a slot on Friday. The reason why we didn’t do it this way in the first place is the lesser of evils. First, waiting for one slot was easier than waiting for two, and, second, giving him contrast one day with sedation meds was preferred over giving him two days of contrast. So, now, it’s sedation meds today that were useless, AND two days of contrast WHEN we get TWO slots. So, so much for the choosing the lesser of evils. I already know that tomorrow the earliest possibility will be 3 p.m. But, at least he is not NPO.
Time is ticking away on this time bomb, and we will be here at least a couple more days. Before we were called for the MRI attempt, we had a visit from a high school and college friend that I hadn’t seen in a few decades, and I can’t believe we didn’t do a selfie!! Other than me running down to the cafeteria, and one quick run to the gift shop for life savers to thwart a bad taste in his mouth from a medicine, we’ve stuck it out in our hospital suite.
I was reading some in the book of Matthew today, and came across Jesus’s lesson about the Lost Sheep, also found in the book of Luke. The two writers both being “professionals” would have dealt with people a lot, so their writings seem to be, in general, about personal relationships between people and Jesus. Matthew and Luke recorded Jesus posing a question to a mixed group of spiritual leaders and social undesirables when he detected condescension from the former. I like the King James version of Matthew 18:12 that reads “How think ye? If a man have an hundred sheep, and one of them be gone astray, doth he not leave the ninety and nine, and goeth into the mountains, and seeketh that which is gone astray?” I like this translation because it describes the shepherd as going “into the mountains,” so not exactly easy terrain, it took some work and effort to go after the one sheep. I think that is an important detail to that verse. Also, notice that he would leave the others in “open pasture”, one translation says, or the “wilderness” another translation says, also a difficult decision leaving the flock vulnerable and unprotected, still there was no hesitation in making the decision. Then search in the mountains, where he can not see the others, can not get to them quickly if he needs to, just to help one.
As a cancer mom with multiple kids, there is not a day that I don’t feel guilty about leaving my other kids because I’m chasing Eli into the mountains. And, I know, it’s not quite the same, and I don’t need appeasing for the guilt, it’s just one of the painful layers of childhood cancer. I am thankful for this lesson God had Matthew and Luke document. Two lessons for me: Jesus almost words the opening question like a rhetorical question. Not only is it okay to leave the flock to help the one, but it is expected. Its the right decision. Secondly, having confidence and trust without hesitation that God will take care of the flock, exposed and unprotected.

The Bible is perfect and simple, a providential collection of inspired writings that are timelessly applicable. Learn what the Bible is, learn what “inspired” writings means, learn how to actually read the Bible in context, and how to apply what was written thousands of years ago to your life today.
June 29:
Eli’s tissue is in the house!! Dr. Aguilera said that she was expecting Eli’s tumor tissue samples today, so praying that testing yields some answers right away. I think some of the testing she wants to do will actually be sent off, so it will be a couple of weeks. If we had a book title for today it would be “Ba-Bam!” Eli had an un-sedated and un-anesthetized MRI this afternoon, and he was lying so still, doing so good that the tech just kept right on going and did the spine, too. So, he did brain and spine awake, took two hours. Thankfully, as a pediatric hospital, they are set up to do movies inside the MRI machine. But, this means we are done in one! Just waiting tomorrow for a shunt setting reprogramming, and some fluids to help flush out the contrast meds, then we will probably be on our way home. He has been in a good mood, playful, and sassy. A new friend brought him one of his favorite lunches, Zaxby’s, for a little treat today, and he was able to pick a toy from the mobile cart, and MRI gave him some Legos. Earlier today, he and I walked around and went to the gift shop. He bought an “Eight Ball”, the ones you ask a question to, and it has a little floating pyramid with an answer on it. He’s always wanted one of those silly things, and he asked it if he was going to get any Legos, and when I overheard him, I said, “I’m not buying any more Legos right now, buddy.” And, then if MRI didn’t give him a little set. He said, “See, I wasn’t asking you.”
So I’m hopeful, and expecting to go home tomorrow (Friday), but we are going home to one that has been sick. Abbey had to come home from camp early, has been running a fever. So, I don’t know what we are going home to. Really can’t have him getting sick, and stalling the start of any treatment even more.
Thank you for your work in keeping Eli’s name in the ear of his Creator.
June 30:
We are headed home, or technically at least to Athens. Abbey is still running a pretty good fever, so we are going to delay at least until tomorrow if I can keep Eli away that long. We start the new chemo on Tuesday, but again it is at an extreme lower dose, and without two of the medicines that should complete the treatment. So half treatment at half dose. His blood work is just not recovering like it should in order to have full treatment, or to enroll in any trials still. And his kidneys are not at fully functioning either. But we are thankful for a doctor that will do something for us, and hopeful that these two medicines that he has never had will do something.
July 2:
Extra prayers this morning as you are in worship. Eli started throwing up during the night, then started seizing. He could not keep the seizure meds down, so we could not get the seizures under control. We brought him to the ER to get meds through his port. He seems stable at this point, was alert before finally falling asleep. We suspect he has a stomach bug, but thankfully he has no fever. Thank you for the extra prayers, he was quite pitiful having to come back to the hospital.
July 2:
Eli is home, but he is sleeping most of the time, won't talk to us when he's a wake, but he might nod or shake his head, so he is at least responsive. He wont eat, but is drinking for us. The seizures really took a lot out of him. There is no way to know if this was a virus that set it all in motion and the course can be corrected, or if it is the beginning stages of his body shutting down from progression. A short time will tell.

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