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.

Sunday, January 21, 2007

His Own Doctor Inside

Today was a pretty good day after a very hard night. We got very little rest as Henry struggled to get comfortable, suffering a rotating palette of aches, pains, itchiness and anxiety. He awoke several times very upset and believing he was in a different bed (he kept saying he wanted to be in the other bed that was "lower," but when we lowered the bed he said that was not what he meant, and pointed to another part of the room and said the bed was over there (Is it lower over there? Does he mean downstage?). Eventually, at about 4AM a little pain medication helped him sleep - just in time for a blood test (at 5AM?).

One of the night nurses suggested that Henry has Posterior Fossa Syndrome - a condition of some children who have had surgery for tumors in that area (basically the rear side of the brain above the brain stem). This syndrome involves a variety of symptoms including mutism or speech disturbances, difficulty sallowing, decreased motor movement, and emotional instability. These symptoms can be very severe and can take weeks or months to subside, sometimes with extensive therapy.

We saw both surgeons - separately - on their morning rounds. Both continued to express how well Henry is doing. They dismissed the Posterior Fossa Syndrome, saying that the vast majority of those patients don't speak at all, and the syndrome gets blamed for a lot of common symptoms.

Henry has been eating better. He officially has been put onto a full liquids diet - full liquids meaning basically thick fluids (but no thin liquids, which can flow into the windpipe easier). Thick liquids include yogurt, ice cream, soup, oatmeal and cream of wheat but, oddly enough, not grits (which of course is the only thing he wanted). We've been going outside the directive a little; if he asks for anything we let him try a tiny morsel. If he can swallow it without much effort, he can have it.

We've been getting him out of the room as much as possible - mostly by wheelchair. He still cannot stand for long or walk on his own, but he's making subtle progress. At this point, knowing Henry and how he has rebounded from all his previous procedures, we have faith in his resilience and power of recovery.

Albert Schweitzer said that every patient has her or his own doctor inside. Henry has a great one.

Tomorrow morning (Monday), we are supposed to go to St. Jude to be entered into the Radiation program. We don't even know for sure if we're being released from LeBonheur, or transferred to St. Jude or what. Dr. M, the radiologist at St. Jude said we could postpone the treatments for a week while we go home to regroup, and Dr. S said this morning that he felt we could put Henry on a plane Tuesday, so right now that remains the plan. When we're registered at St. Jude, we will check into a hotel near the airport, Dad will return the rental car, and early Tuesday morning we will shuttle to the airport for a 7:30 AM flight. St. Jude will arrange our flight back to Memphis, probably around the 30th. Dad will stay a couple of days and then return home to go back to work and keep the home fires burning.

That's our plan. And we're sticking to it.

Until we get unstuck.

More Fun Facts...

We have discovered many new things about life as a result of side effects from this latest surgery and its medications. What we have learned from Henry the past couple of days:
  • Another name for Dad is "you ugly man,"
  • Mama and Dad are big, fat liars,
  • Dad is an idiot.
  • "Shut up" is the new slang for "yes sir" and "yes ma'am," and
  • Mama is a traitor (a traitor being someone who, apparently, "traits" people).
Something else we learned:

This morning, a young patient in the room next door was obviously very upset, crying and screaming for some time. Henry called for Mama.

"If that ever happens to you," he said quietly, "I've got your back, no matter what."

Saturday, January 20, 2007

What Happens Next?

The last couple of days have been marked by a tough recovery period for Henry. The good news: Dr. B came by this morning and said that Henry's recovery is ahead of what would be expected.

The bad news: he feels like holy heck. He has, of course, the post operative pain of the head and neck, double vision (as he did after both previous surgeries), constipation (also as previously experienced), hoarseness, and difficulty swallowing (ditto, although not as bad). He also is exceptionally weak - much more so that previously. As of Saturday, he cannot walk on his own, and has no stamina: a short trip to physical therapy totally exhausted him yesterday. He has been waking up frequently during the night with bad dreams, and has been uncharacteristically bitter and hostile.

Yesterday we thought we might be released today (Saturday), and on Monday Henry would be entered into the system at St. Jude. We changed our flight home from Saturday the 27th to Tuesday the 23rd, expecting to return to Memphis for the first radiation treatment by Monday the 29th.

We now don't know if he'll be released this weekend or if he'll be fit to travel by Tuesday. We do feel that it's important for all of us to get home for at least a little while before starting 6 1/2 weeks of therapy in Memphis, but we have to stay a little fluid right now.

Darn Those Internets...

A note about the (not so) timely posts:

Here at LeBonheur we are fortunate to have WiFi available. However, it does have heavy restrictions, an intense firewall, and requires registration and a password every time we log on, every time we check email, and any other time the server decides. The server connection to the internet is also remarkably slow, which likewise causes us to lose our login every time the laptop screen dims to save the battery!

As a result, it has taken sometimes more than a day to get info posted, and sending emails is almost always impossible (although we seem to have no trouble receiving email).

Much appreciation and many thanks to everyone for all the heartfelt wishes and support, and for your interest and patience in waiting for updates.

Thursday, January 18, 2007

A Good MRI

Yesterday morning, bright and early, we saw both Drs. S & B, who remarked how well the surgery had gone, and in what good post-op shape he is in. While obviously pleased with the results, Dr. S stopped short of declaring it gross total resection (GTR) until the post-op MRI confirmed. Henry had the MRI about 8:30 AM. We didn't hear anything for quite a while, but the nurse in the ICU figured that the surgeons probably had taken a look at it and suggested that if anything really bad and/or immediate was on the film, that we would know, otherwise we would hear at morning rounds.

Late afternoon we were waiting for a room to be free on the main floor, and as soon as that happened we were released from ICU. Henry is in quite good shape, although quite uncomfortable and in a lot of pain. He has some trouble swallowing, but not as severe as after his second surgery. He is, not surprisingly, quite weak and wobbly on his left side. Also not surprising, he is very cranky.

Thursday morning, both surgeons dropped quickly by separately, and both said that the MRI showed no trace of tumor. While we of course rejoiced at this news, we remained guarded: after all, we had heard this before. We were scheduled to meet with the radiologist at St. Jude at 1PM, so we thought then we would learn about a confirming MRI that would occur after post-op swelling had gone down, and that would certainly precede any radiation therapy.

Radiation Therapy is a critical component of the treatment. Even with GTR, it is established fact that cells would be left behind and that, while not technically tumor, could easily grow and reorganize and cause a more malignant recurrence.

We had a long, concise meeting with the radiologist (Dr. M; we feel like second grade and the Alphabet People...), and Lo, and Behold: indeed it has been classified as Gross Total Resection!

[We pause here for the requisite dancing in the street...
OK, we now return you to our regularly scheduled post]


With no further followup MRI, there is no need for delaying the radiation. Since St. Jude has treated more cases of ependymoma than anywhere in the world, we feel it best to continue the treatment here. Mama will shoulder the responsibilities in Memphis, while Dad holds the fort at home and plays tag team as possible.

It will be a logistical nightmare to figure out how to fit this 6-and-a-half week treatment into our lives, but we don't question for a minute the imperative and wisdom of this choice.

Fun Facts Amout Memphis

  • Driving to Memphis from Montgomery, take Route 78 in Birmingham through Tupelo, MS. Once over the TN border, R78 becomes Lamar Avenue.


  • Elvis lived for a few months at 2414 Lamar in 1955.
  • Just past the Memphis airport, Lamar Avenue crosses Getwell Road.
  • 1414 Getwell Road is the last home Elvis' family rented in Memphis in 1955 and 1956.

  • A young cook at the snack bar of the Pink Palace Museum in Memphis named a sandwich after himself: the Lamario Special.







  • Mario, Henry's favorite video game series, has been named the 2006 Man of the Year by GamePro Magazine.






  • The senior US senator from Tennessee is Lamar Alexander.











  • After firing Lemario, the snack bar at the Pink Palace renamed the sandwich the Lamar Special.






  • In the last known sighting of Elvis, he was seen in LeBonheur Children's Hospital, dressed in a silver lame suit signing autographs as Lamar Alexander.*
*This last item is probably not true.

Tuesday, January 16, 2007

Third Time's The Charm

[Updated 3:47 PM CST]

3:00 PM (CST)
Mama and Dad were called in to see Henry in ICU. He looks gorgeous. He woke enough to tell us that he's thirsty, and to tell us that he can talk (a major milestone). Dr. S came by and told us how well the surgery went and that Henry is doing great. He still needs to be watched carefully for the next 24 hours, and there will be yet another MRI to confirm our results, but we look forward to good news and minimal negative effects.

1:00 PM approx (CST)
Dr. S came up to the room. He said the surgery went very well: the tumor came out cleanly, the arteries and veins were not damaged, and the nerves looked good. He thought he would try to take the breathing tube out today, and said we would have a swallowing test in a day or two.

12:28 PM (CST)
Nurse P said Henry is doing great and that they have begun closing. He should be released to the ICU in 40 minutes.

11:26 AM (CST)
Nurse P reported that Henry is doing great and estimated about two more hours of surgery.

10:24 AM (CST)
Nurse P called to tell us that all continues well and that a tissue sample was sent to the lab (a tissue sample is required for admission to St. Jude, if we, in fact, are transferred there).

9:20 AM (CST)
Nurse P called and reported that Henry is fine and so far all is well.

8:20 AM (CST)
The surgical Nurse called to say that surgery had begun at 8:09 AM and that everything was fine - all Henry's vitals are good.

Dr. S had said that he does not use any "stealth"- style guidance system for this particular surgery (although he does use surgical microscopes), so there was less set up time this morning compared to Henry's previous surgeries.

6:30 AM (CST)
Henry was prepped for surgery in his room and then transported downstairs to the second floor where the operating room is.

On the way into the OR patients pass through the "Bunny Room." This is actually a small hallway decked out like a toy shop, where the kids can pick a toy before going into surgery.

We then met briefly with the surgeon, Dr. S, and then the anesthesiologist, who gave us the procedural rundown. We met Dr. S's partner, Dr. B, and the attending nurse, who said she would call us every hour once surgery was underway. At 7:15 AM he was wheeled into the OR.

For whatever reason (very likely a different type of sedative), Henry was a bit more apprehensive before going into the OR, and that of course made Mama & Dad even more nervous. There is no formal waiting room for the OR, so we will wait in the room on the 5th floor until he is moved to ICU on the second floor, where we will have a parent's room.

The Power of One

In Pokemon 2000 - The Movie, when the young hero, Ash, realizes he is the "chosen one" to battle the Evil Forces in the world, he exclaims:

"Being a Pokemon trainer is tough enough, but saving the world...that's really hard!"

Here at LeBonheur Hospital, "The Power of One" is the recognition program for outstanding service by individual staff members and volunteers.

For Mama and Dad, it is our faith and marvel in Henry's strength and courage.

video

Sunday, January 14, 2007

Safe and Sound In Memphis


By the time we de-planed, got the rental car and made it to the hotel, it was after 9:30 PM. We had a very nice dinner at a nearby restaurant and then snuggled in for the night.

Today we have time to relax and do some sight-seeing. Mama says we must go to the Peabody Hotel to see the bizarre ritual of ducks which make a daily trek on a red carpet from a pool in the lobby to their evening quarters.

Tomorrow we have our appointment with Dr. S at 10:15. We will check in at 9:45 for the requisite paperwork, etc. We anticipate an exam/consultation that could last a couple of hours. If, as expected, we decide to proceed, Henry will be admitted to LeBonheur Children's Hospital at 2PM. His surgery would be on Tuesday. Once he has been admitted, Mama & Dad will be able to stay with him at the hospital.

We had some initial confusion about what hospital Henry was going to. Dr. S was introduced to us (and on the website) as the head pediatric neurosurgeon at St. Jude, but apparently St. Jude is not a surgical hospital, so the surgery will be performed at LeBonheur and Henry would be admitted to St. Jude after the surgery. Since we expect to return home for followup therapy, we probably wont be at St. Jude for long, if at all.

Monday, January 08, 2007

Long Distance Information Give Me Memphis, Tennessee

We met with Dr. T today at 3:30. He was very sensitive and judicious, and presented quite plainly his recommendation for surgery at St. Jude. He felt that while he could do the surgery himself, there should be a benefit to utilizing a fresh set of eyes. Although details of the risks and dangers associated with this third surgery will need to come from Dr. S (the surgeon at St. Jude), Dr. T outlined a few percentages that, while very dangerous and scary, are a tiny bit more promising than we originally thought. Dr. T was great in committing himself to continuing as Henry's doctor, and supervising all followup care (including radiation) when we get home.

Henry did not want to face another surgery, but when advised that it was 98% sure, he shrugged and said:

"Well, I went through two surgeries already. I can do one more."

Dr. T's office would contact Memphis and let us know. During the drive home we got the call: an appointment with Dr. S at 9:45 AM on Monday, January 15 (!) and surgery tentatively scheduled for Tuesday, January 16 (!!!).

Saturday, January 06, 2007

The Ante is Raised

The MRI scheduled for Friday was a full spinal scan, both normal and high-contrast scans, and takes about three hours. Since it requires an anesthesiologist, scheduling is complicated. They finally settled on early morning, requiring check in at 6AM. After check-in, Henry was sedated; the initial sedation to relax him did the job in spades. He got very drowsy, but still talkative and thoughtful. He suddenly noticed the lump on his throat and asked what it was.

"That's your Adam's Apple," he was told.

"Why Adam?" he wanted to know. Was it just some guy named Adam who happened to have an apple? We asked him back, do you remember Adam from the Bible? He looked at us with dreamy eyes.

"I remember Jesus."

As he entered the scanner, Henry was definitely feeling no pain.

"I want a prescription for this sedation," he declared.

"Yeah, we all do," Dad said dryly.

During what was among the longest three hours we ever spent, Mama & Dad tried to confirm if we were to see Dr. T that afternoon. He had called Mama the day before to say he had spoken to Dr. S in Memphis about Henry's case and was sending him the MRI. Dr. T was becoming more convinced that another surgery was really the best option, and expanding the surgical team an appropriate move at this point. But due to some emergency surgeries, Dr. T's schedule had gotten all fouled up, and it looked like we wouldn't talk to him again until Monday.

We stopped for lunch on the way home. When Dad saw the "restricted" ID on an incoming call, he rushed out of the noisy restaurant to take the call, only to have a Mack truck pull up next to him making it challenging to hear Dr. T on the phone say that the spinal MRI looked clean (subject, of course, to the radiologist's opinion), and that Dr. S had seen the cranial MRIs. Planned radiology treatments have been postponed. We set an appointment for 3:30 PM Monday, Jan 8 to discuss the recommendations, risks, and possible scheduling of a trip to Memphis.

Friday, January 05, 2007

Lamar Strikes Back

At 3:30 PM on New Year's Eve, we went to the hospital for Henry's scheduled MRI. This scan was intended to be the final, definitive test confirming the post-operative scan taken two days after his second surgery. We went home, watched the New Year's Eve Disney Stars' Bowl-a-thon and some Hanna Montana reruns, toasted the New Year with sparkling pomegranate juice, and went to sleep.

On Tuesday, January 2nd we went to our appointment with Dr. T to review the MRI results. Henry was in a lively mood, and as Dr. T entered the exam room, Henry filled his hands with Skittles, and chatted amiably. Then, Dr. T Dropped the bomb.

"I wish I had better news to tell you," he said. "there is still tumor."

"...And it appears to be growing."

His words fell like cold sleet that clung but didn't soak in (a meager "Really?" was all that Dad could muster).

Dr. T himself clearly was blindsided; no one expected this. With only a few moments to review the MRI before meeting with us, Dr. T was unprepared to answer all the questions or present a clear treatment path he could recommend other than proceeding with radiation as planned. He did not feel comfortable with more surgery, given the positioning of the tumor and the extreme risk of serious neurological damage.

"Can we look at the pictures?" asked Henry.

We went into the office and looked at the pictures, comparing a film from right after the November 13 surgery to one from December 31. It was shocking to see the clear, bright image that looked at least the size of a quarter, sitting in the edge of the brain stem. Dr T said he was certain that it was tumor. Henry looked closely at the screen.

"Is it possible that you're wrong?" he asked.

"I wish I could say that," the Doctor answered slowly.

Looking at the film, Dr. T was processing what he was seeing and trying to develop options: gamma knife was still a possibility, although perhaps after standard radiation (Lamar might still be too big for that), and he would confer with Dr D (our radiologist); IMRI technology was discussed (pretty technical stuff, but apparently has little to offer us); further consultation with Dr. S at St. Jude in Memphis is warranted.

It was horrifying to learn how few choices we might have, but heartening (in retrospect) to observe Dr T in real time gather all possible resources to pursue in order to present a solid recommendation. He scheduled a full spinal MRI for Friday, 1/5, to determine, given the growth, if any seeds were sown in the spinal column. He would call us after his consultation with Dr. S. He said there might be an exam in Memphis.

As we walked out to the hazy, gray day, Henry insisted that we drive to River Street, not just for lunch, but to walk around and go to the Candy Factory. We visited a toy store and on the drive home, Henry was spirited and talkative, as usual.

As we drove on a side street, Mama said, very quietly, seemingly to herself, "Everything is going to be OK."

"What?"

She pointed to a building being renovated on a corner lot. It was surrounded by the standard plywood safety fence painted white. And in big, bold, red letters eight feet high it read:

EVERYTHING IS GOING TO BE OK

After we got home, Dad went to work to pick up some papers, then we all went out to Henry's favorite restaurant, the Crazy Crab. He ordered clam chowder and a huge seafood boil...and actually ate about half of it. He marveled at the gigantic salt water aquarium with the sea snake, starfish and sea urchins.

While putting the doggie bags in the refrigerator, Henry smiled and said:

"I had fun today!"

"I did too," Dad said, lying just a little.