Thursday, May 3, 2012

Maybe it’s the fumes from all the alcohol wipes used to clean Eli’s line that clouded my senses, but I let Eli buy the Anniversary DVD pack of the Three Stooges today. Eleven hours of Mo, Larry, Curly or Shemp or a whiny stooge named Joe or a who-told-this-guy-he-was-funny stooge named Curly Joe. Hmmm, Eli, the Three to Six Stooges and me, hold up in a hospital room for six days. I am either a sucker or stupid or both. We go “in-patient” at St. Jude Friday night about 8 p.m. so that Eli can begin receiving IV fluids before starting the chemo drugs Saturday morning. St. Jude is mostly an out-patient hospital with only 78 in-patient beds compared to their 300 patients that come through the front doors each day. The beds are reserved for patients receiving chemo treatments and for patients who have become sick and need to be isolated and cared for by a nurse. They do few surgeries here, mostly routine, like central lines and ports and they did Eli’s hernia. But all of those are out-patient. So, as an out-patient, you have appointments and go about your business in between. Appointments are at “Clinics” which are kind of like home-base for the team assigned to you. Or you have appointments at support clinics like radiation or imaging or rehabilitation. I’ve mentioned before that we’ve seen an eye doctor, a dentist, a social worker, a psychologist and a school teacher, and several research doctors. Over 3500 people work at St. Jude and it is in the top 100 places to work according to CNN Money in 2011 because of the usual employee pluses. But, I’ve heard from more than one, albeit not many because I have not pursued research into it, that they work at St. Jude because their child was treated at St. Jude and they fell in love with the place and the purpose. I’ve learned recently of a woman whose daughter was treated at St. Jude and she vowed to become a nurse with the hope of working here. Her daughter has since passed on, as well as her husband from cancer. A young widow, she did pursue that degree and is receiving that honor this weekend. I have never met her, but another example is Linda, the director of Patient Services with whom I had one of my first sit-downs. It had been an emotionally and physically draining roller coaster of a month for me since Eli walked out the back door with his purple drink cup and a hot wheels in hand and then didn’t come home. In the eternity of a blink of an eye I found myself sitting in her office discussing long-term housing for me and Eli while he was being treated for cancer. Vic had gone home with the kids to settle and salvage what we could there, so I was pioneering our way here. At this point, having gone through the first surgery and being thrown over into St. Jude, my emotions were drained dry. I was numb and functioned only by simply putting one foot in front of the other in the direction the last person I saw sent me. So, I found myself with Linda at a conference table late in the afternoon. Eli was still in a wheelchair from the first surgery, but he was satisfied to play Angry Birds on his Kindle while we talked. No taller than most of the preteens being treated here, this grandma pocket rocket was energetic and eager to be of service. At the last minute she squeezed by Eli's wheelchair to sit across from me and her plump cheeks smiled pleasantly with pride in her job.  She was out of breath with busyness because she and her department were in high demand. She put some colored papers in order on the table facing me and upside down to her. She started going through each one outlining or circling parts with a ballpoint pen as she discussed it, but still maintained friendly conversation in between. I sat on the corner of the chair as I usually do and instead of looking at her would just lean over the page and act like I was reading what she was pointing at. She asked the usual things about us, where we were from, why were we here. Then she told me that she worked at St. Jude because her son was treated here decades ago (I can’t remember the exact number) so they just all moved here and never left. She continued with some information on one of the pages and then asked how many kids we had. I said four, and she looked up at me and said in a still voice, “I had 5.” She paused and looked at Eli and said “It’s hard, I know.”  She blinked back into concentration and said something else about one of the sheets. Then she lifted her head to look at Eli in almost a stare and asked “how old is he?” I said, 7, and without taking her eyes off of him, she said “my son was 8. He was my oldest.” Nodding, I looked down at the sheets and said “he is number three.” I watched for the next circle or underlining and noticed the pen was just kind of scratching the paper not making any marks. I lifted my eyes and she sort of just tapped the pen gently as she looked at the paper but was obviously not seeing the paper. She didn’t make a sound, closed her eyes and kind of shook her head a bit and opened them with a frown to look down at the papers in an effort to focus. She put her hand up in an apologetic “give me a minute” kind of way. So, I waited silently. Dry-eyed, exhausted, and almost incoherent, I couldn’t give her anything. I was drained dry of emotions and just plain tired of crying, I physically couldn’t do it anymore. I always felt bad about that, not joining in. She gathered the papers that were already straight and tapped the edges on the table to straighten them again. She laid them in front of me as if we hit a reset button and placed her pen on top ready to go. Then she looked at me with eyes full of emotion and said “some days…” She took her cleansing breath and began talking about a map of Memphis and where not to go, but I had already been there.
Eli has had a very good day. I’m including a picture of him eating Subway and watching the Three Stooges. He ate almost the whole sandwich except for a little sliver, not much else to eat today, but I was still so glad to get a chunk of something at one sitting. He always protests to get Subway and wants Burger King or McDonalds (which we do), but he eats Subway or Quizno's the best. I’ve stopped asking and been just getting. Again, it will be too little too late because his appetite will drop quickly when the drugs are administered. But, still we will celebrate what each day brings. His CT scans looked “beautiful” today. There was no sign of bleeding, the brain had expanded back to normal and the ventricles had relaxed around the catheter. So, pray all that continues to work as designed. He is doing well, he looks strong, and is in good spirits.

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