Henry's Blog

Saturday, January 27, 2007

Alone In Memphis

Dad left Memphis on Tuesday morning. It was very painful to leave - Mama and Henry had just begun a heavily-scheduled week at St. Jude, and everyone was already exhausted and emotional.

The trip started amiss on Saturday night when, facing a 5:35 AM flight, we suffered a sort of group meltdown that resulted in very little sleep for anyone. When we arrived at the airport we discovered that tickets had been booked for everyone - except Henry! Apparently the booking agent mistyped the credit account number so that Henry's ticket did not get charged properly. So, even though we had a confirmation number and a receipt stating that we had an e-ticket, the system would not print him a boarding pass. The airline staff was also confused by the following:
  1. the travel party was under two different names,
  2. two reservations (Henry and Mama) were one-way, but Dad's was round-trip, and
  3. Since St. Jude was to pay for Henry and Mama's tickets but Dad had to pay for his own, the flights were reserved on two different credit cards.
This was all too much for the counter help, and we had to purchase Henry a new ticket. By this time the flight was boarding, we were frazzled and we failed to make advance wheelchair accommodations for Henry in Charlotte and Memphis (Henry has had much more difficulty walking and regaining his equilibrium since this last surgery). However, once in the air we could leave that behind, and we had a nice flight.

"The adventure begins!" Henry declared as the plane left the ground.

There was more confusion at the Charlotte gate (as the original boarding passes were still in the computer), but was easily resolved by much more helpful airline staff. Finally we were in Memphis, settled into the "Grizzly House" (St. Jude's short-term housing), and were off to find some dinner.

Before we left Memphis on our last trip, we were given a daily schedule for Monday, which cited our first appointment at 10AM. We caught the hospital shuttle, had some breakfast at the cafeteria, and reported to registration (patients must check in every day, get a wrist band, get a weight check and a copy of the schedule for the day). We looked at the new schedule they gave us and found it had been completely revised, an that we had an appointment at 9AM...at this point it was 9:45, so we obviously missed our first meeting of the day.

What followed was a series of appointments with social services, patient services, and several other nurses/aides/techs. In the middle of this, Henry had a melt-down. He was hungry, tired, didn't feel well, and wanted to go home. Although we really didn't have time in the schedule for lunch, we rushed to the cafeteria to try to get him something to eat. He was totally distressed at this point. Probably the realities of the unfamiliar location and that he would be here, away from home, for two months was starting to sink in.

The next appointment was with Child Life Services, and Henry's rep tracked us down in the cafeteria. After talking with Mama and Dad (who had to give the inevitable backstory one more time) and Henry had calmed down some, the rep talked with him, and started preparing him for the radiation prep sequence.

Prepping for radiation involves, among other things, a CAT scan that is used for body positioning (called "simulations"). Points are plotted using the scanner, and face and body molds are created to hold the body in position during the actual treatments. Unlike all the previous scans and MRIs that Henry has had, these will all be face down.

He was told that he could pick music to listen to during the simulations. It turns out Henry and his rep both like High School Musical, so she ran to get the CD.

In the meantime, Henry saw a few more doctors and nurses, and was shown a DVD of the radiation prep ant treatments. The only thing that upset him was learning that he may have to have some radiation markers (about the size of a freckle) literally tattooed on his scalp...it was the needles that bothered him. It was agreed that the tattoo markings would be done while under sedation for a full spinal MRI later that week.

Henry was the consummate professional as he went in for the CAT scan simulation. He was brave and he was ready. Mama and Dad couldn't stay in the room during the procedure and, with "The Start of Something New" blaring on the boom box, retreated to the waiting area.

About thirty minutes later, the radiation tech came out and said that, just as they were almost finished, Henry said he couldn't breathe and called for us. As we entered the room we saw two nurses holding Henry - who was spitting up blood. Since he was lying face down his nose got congested and phloem mixed with saliva collected in his throat. Since he still has difficulty swallowing, he couldn't clear his throat to breathe. When the nurses sat him up and had him blow his nose, he blew out a blood vessel and had blood pouring out of his nose and mouth.

Things got under control in just a few minutes, but the remaining tests were cancelled for the day. We got the revised schedule for Tuesday, and headed back to the Grizzly House.

Since Dad was leaving tomorrow and the rental car would be gone with him, we opted for dinner in a restaurant. Henry chose a sushi restaurant we found on our previous visit. This establishment introduced Henry to eel, octopus and red snapper sashimi (his new favorite). It ended up being a very nice evening.

Tuesday's first appointment was at 8AM, which meant check-in at 7:45. Dad had a 9:35 AM flight back home and a rental car to return. We got to the cafeteria at 6:30 and after breakfast we said many goodbyes through many tears, and as Dad left the hospital we shared more longing than any of us had ever felt before.


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