Tuesday, May 29, 2007 – rewritten

Tuesday started out as a “grumpy” day. Ethan seemed to be easily irritated in the morning (aren’t we all?). Every Tuesday there are student nurses from Northeastern here, and this was the second week that a student was assigned to Ethan. While they are really nice, their tasks seem to take 10 times as long as a regular nurse, resulting in them hovering over Ethan for the entire day! I think that this may have played a part in his grumpiness, but not sure. Overall though, he’s very compliant with everyone.

A good friend of Ethan’s came in today to visit him for the first time. While I know that deep-down Ethan was really happy to see his friend and play, his level of enthusiasm wasn’t there, and it wasn’t their typcial “happy-go-lucky”, energy filled playdate. He enjoyed their games of Connect Four, Candy Land, and their brief trip to the garden, but he just did not have the energy to sustain himself for the two-hour visit. Towards the end, he fluffed up his pillows, took his “sound” off, and started to nap. He was worn out.

Ethan hasn’t eaten anything by mouth in a few days. He takes only minimal sips of water or root beer throughout the day. He receives “tube feedings” through his NG tube (the tube that goes in his nose and to his tummy). During the night he receives 840 calories over a 12 hour period, and during the day he gets 360 calories over a 2 hour period. We’re thrilled we’re able to get those 1200 calories in him, as it would be impossible without the NG tube. He’s lost about 4 pounds since he came in, and looks really skinny…too skinny. But I see his face starting to fill out again, and hope his body does as well. At home over the weekend, I was shocked when I saw Eliot’s thighs…they looked GINORMOUS! If only we could give a little of that rolie-polie fat to Ethan!

Ethan’s gums have been extremely swollen for the last week and a half or two. In addition, I think that he’s developing sores in the back of his throat (Mucousitis – sores in your mouth/throat – is a side-effect of the chemo). He complains a bit throughout the day, and yesterday we treated this with a 1/2 dose of morophine, at two different times in the day.

Daddy came by after work to visit for awhile. We ventured to the garden again, this time for about 30 minutes. It was a beautiful evening. Ethan’s new thing is to bring his new remote control Toyota FJ Cruiser down with him, and zoom it all around. He’s mastered the controlling of it, and enjoys finding gates, bumps, etc. to make it’s adventures even more exciting. It was great for the three of us to be together. Yancy and I haven’t really seen each other for more than 30 minutes in about 3 weeks now. Ethan managed to walk to the garden twice in one day, but on the way back last evening, enjoyed a ride on Daddy’s shoulders.

I tried to take advantage of having Daddy there too, and escape outside for a run. Well, it turned into more a run/walk, and only lasted 10 minutes, but it felt good to get out, on the streets and not be confined. I knew Ethan had a long day ahead of him tomorrow, so I wanted to be the strongest I could. I hope it worked…

PROCEDURES: So, today, at 11:00 a.m., Wednesday, Ethan will have a few procedures done in the Treatment Room on our floor. We opted for this room, over the Operating Room, for a couple reasons: 1) no general anesthesia and 2) he’s already been to the OR twice in the last month.

He will be under concious sedation for this time, coupled with some local anesthesia.

I mentioned that Ethan’s gums have been swollen. Sunday, the doctors raised their concern to us, stating it could be leukemia in his mouth. The only way to find out is to do a biopsy. So, today, a biopsy of Ethan’s gums will be done, taking a couple samples of gum tissue from different places in his mouth. We don’t yet understand the implications of leukemia being present in his mouth, as the doctors can’t determine or predict anything until they have conclusive results. The only thing they have said is that if present, it could change his course of treatment, as it might require stonger, more aggressive drugs.

The two other procedures are the bone marrow biospy (taking an acutual sample of the bone) and bone marrow aspiriate (taking a sample of the fluid inside the bone marrow). While they analyze Ethan’s blood every day for cancerous cells, they are looking to see if there are new cancer cells within the bone marrow. We will receive general results within 24 hours, but for the most part, these samples will be sent out to St. Jude’s in Memphis, TN, and analyzed there. We should receive results back mid-to end of next week. These are procedures that are usually done at the end of Induction I (the first treatment cycle, about one month long), around Day 30-33. Because Ethan is in the clinical study, it is done around Day 22. (Today it’s being done at Day 21, as we wanted to do the gum biopsy at the same time, and wanted it done sooner, rather than later.) St. Jude’s has more precise tests they do, allowing for more accurate detection of leukemic cells. By doing these more accurate tests, and about 10 days earlier, the intent is to begin Induction II (the second treatment cycle of chemotherapy) sooner if an undesired amount of leukemic cells are present. It’s rare that there are NO leukemic cells anymore after Induction I. So, at this time, I’m really glad we made the choice to do the clinical trial, and have access to this earlier detection testing.

Lastly, if those procedures go well, we’re going to try and put a new NG tube in. Ethan’s NG tube leaks at the end, as the plugs have failed. It requires a lot of tape, and is a pain, and can be messy if it opens at night in bed, while his feeding is occuring. It’s like a leaky bottle of formula in bed…yeah, gross. These tubes are suppose to last about 4 weeks, and his has been only two weeks.

I am able to be with Ethan during his procedures. That makes me more comfortable, knowing what is going on…I hope that he stays relatively calm and cooperative…we’ll see. I’ll spend the morning subtly mentioning the procedure, and prepping him, as I haven’t talked about it yet with him.

I’ll write later this afternoon and let you know how it went…So long for now…