Round 6 - the Battle of the Tube

Somehow we managed to get daily doses of Ifosfamide (mustard gas) and Etoposide (created from the poisonous American Mayapple- possible side effect of drug: Leukemia!) in and around the many scans, Xrays, and doctor consultations that filled our 6 days in the hospital this week.

Millie was admitted feeling quite low from her mucusitis, and was in no mood to do much else than watch movies and peg me with beanie babies when she wanted my attention. As usual in the hospital, eating did not make her short list.

I should pause and note that we can go 5 days in the hospital without receiving one tray of hospital-provided breakfast, lunch or dinner. She simply will not eat hospital food. We pack in some food, and the rest is procured out on Piedmont Avenue or brought in by friends.

Millie's low energy and limited desire for interaction let me to the idea of teaching her some sign language to communicate her basic needs. I found an online ASL (American Sign Language) instructional site and in no time Millie was signing: bathroom, cookie, more, water, milk, hungry, movie, tv, please, thank you, and sushi (ok, we made that sign up after not finding it online).

Due to the worry that some of the chemo drugs may be causing neurological side-effects, Millie had several Xrays taken of her lower abdominal area to look for a possible spinal tumor or other reason behind the lingering nightly incontinence. The neurologist (aka Dr. Rachet) met with me after reviewing the Xrays and reviewing Millie's growth chart on Thursday morning. Although she had good news (there was no additional tumor or any neurological damage), she took it upon herself to advise me in heavy-handed terms that Millie's weight was too low and that she was "slipping off the growth chart". Millie was also was completely full of stool (which is coincidentally how I viewed the neurologist) and needed a drastic flush of "Go Lightly" (a laxative whose name is about as truthful to its purpose as the Clear Skies Initiative).

And so began the feeding tube war.

The tube was inserted into Millie's nose on Friday morning, just before her bone scan. The tube is yellow and marked along the side in inches, like a ruler- so you can easily see how many inches of tubing goes from her stomach, up her throat, through her left nostril, and down behind her ear and down her nightgown to be attached to the feedbag. Yep, a feedbag. A large purple bag to hold quantities of liquid nutrition to be dropped into the tube using the measured timed dosing of the feeding tube pump. Millie's IV pole was something like those flying swing chairs at the carnival- with all the drugs, saline, chemo, and the feeding pump and bag hanging off of it.

I will spare you the details- but suffice to say the GoNotLightlyAtAll worked its magic and, admittedly the liquid nutrition did too and Millie perked up quite a bit by Saturday- when she ate about 8 oz of sashimi and a bunch of graham crackers.

Our oncologist must have been scared by the Neurologist, and she too jumped on the "slipping off the growth chart" bandwagon- demanding that we stay in the hospital through Monday so that Millie can have 3 full liquid nutrition meals each day and so that we may receive feeding tube equipment and training for at-home care. She was requiring that Millie keep the tube in her nose for a week! I called my mother, who still has all the notebooks she kept of my own growth- and low and behold- Millie is nearly exactly the same height and weight that I was at her age. Hurumph!

After long consultations with Brian and much moxy gathering, I put my foot down. (And my knees in a begging stance)- and pleaded, reasoned, negotiated, and promised up-down-left-right that we would get Millie to eat and gain weight without the tube. I flattered. I agreed with her. I understood her concern. But as Brian said "there is no way she is coming home with that tube in her nose". The doctor acquiesced, with the caveat that we must come in one week to have Millie weighed. (Reminds me of when Millie was a newborn and I had to take her every day to be weighed with the threat of the doctors pushing formula if she wouldn't gain weight nursing. Thank goodness then, like now, we were able to triumph our own way)

And let me tell you, since we've gotten home she's eaten very well. Thanks to Daddy's cooking and some doses of Megace (appetite stimulant), she seems to be on the upward swing.

Final note- Millie's Xrays, CT-Scan and Bone Scan came out CLEAN! No evidence of the cancer having spread. We also had our pre-surgery MRI this morning, with Millie once more being anesthetized for the procedure. She did very well (sleepily signing to me "home" upon coming-to). The doctor said he noticed a significant reduction in tumor size from our first MRI back in December. We will write later this week of the official results.