Henry's Blog

Thursday, September 14, 2006

Henry, the Hero


Henry felt pretty nauseous and fatigued today, so he stayed home from school.

In my hurried attempts to get the facts down, I haven't written much about what a champion Henry has been though this ordeal. Yes, he has been fearful, angry, frustrated and frustrating at times. He has occasionally made some of the simplest procedures more difficult by fussing and fuming. But he has also been amazingly courageous, accepting, accommodating, funny and philosophic.

We are very, very proud. He has waited literally hours for treatments and procedures, been able to lie still for thirty-minute long brain scans, been stuck, poked and prodded in every conceivable location, has been given upward of a hundred different medications by way of multiple delivery systems, has been examined by no fewer than 40 doctors and specialists, put up with home injections by Mama and Dad, been denied food for days while waiting for procedures and ended up too sick to eat when they were finished. He has lost most of his summer, some of the new school year, and all of his hair.

Through it all he has kept his curiosity, humor and spirit. He's full of questions to everyone about what they are doing and wants to explore all the equipment. He jokes with the doctors and nurses and sings their praises (He told Dad: "You need to give them a $100 dollar tip!). He has downplayed his surgery, stating: "It's only brain surgery...they didn't operate on my heart!"

While it's true that every trip to the hospital or clinic has not been cause for celebration, every trip home has been. The Henry we know and love always comes out in full force during the drive home, and he buoys all our spirits.

He has jumped back into his schoolwork and faced his classmates with aplomb. When asked if he wished to address the class about his condition, he did so with honesty, directness and confidence. His classmates have elected to take turns wearing hats to school to show support and solidarity with Henry. His guidance counselor said "Henry is our hero."

Mine, too.

-Dad

Wednesday, September 13, 2006

Cycle "B" Begun...


Home from the hospital by 1pm today.

After spending most of the day getting IV hydration, Henry received a dose of Vincristine followed by a dose of carboplaten (the carboplaten can cause dehydration, which is why we have to spend a night in the hospital for hydration on the first day), and then a "hot dog pill" of Etopside by mouth. He will continue to take Etopside for the next 21 days.

After getting through the first cycle with few side effects (other than the hair loss), it appears that the Etopside is causing some nausea and fatigue that we may have to contend with. We have four additional meds to help with stomach and infection issues, but hopefully we won't have to do the home injections.

Next Tuesday is our last scheduled chemo treatment at the clinic, although we'll have other visits for blood tests during the following two weeks.

Our MRI is scheduled for 11am on Tuesday, Oct 10, and we meet with our surgeon at 1:45 that same afternoon.

Keep your fingers crossed!

-Dad

Tuesday, September 12, 2006

Under the Weather

Last Tuesday we went to the clinic for blood tests. Although his total white cell count was quite low, his infection-fighting cells were up. Since we are not currently giving home injections to boost cell production, we just need to be extra careful in guarding against infection.

With three days left in the chemo pill regimen, Henry bottomed out these last few days. He has been riding waves of nausea which make it all the more difficult to take his oral medications. Nothing tastes good to him right now, and he is very sensitive to smells. Although he missed school for most of last week, he and Mama have worked diligently to keep up with school work, and he created a great pop-up book report. His regular classroom teacher will start coming to the house for homebound lessons on days he can't get to school.

Dad has been MIA for most of last week. Leaving by 6am and getting home after midnight meant not seeing the family for days on end, and leaving Mama with all the caretaking duties (not the least of which is the taking of the dreaded "P"). Putting up a big musical is always arduous, and this production was particularly demanding. We took Henry to the opening on Friday but he really didn't feel well. He very much wanted to go to the opening night party (held at a local seafood place), but as soon as we arrived the smells of the restaurant immediately made him feel sick, so we did not stay.

He has had friends over much of the weekend which keeps his spirits up, and he has been able to have fun.

We go back to the clinic Monday for more blood tests. Wednesday we meet with a local volunteer from the Make a Wish foundation. The MRI, followed by our appointment with the surgeon, is on Tuesday, October 10.

- Dad

Saturday, September 09, 2006

Welcome to Henry's Blog!


Hello! Welcome to Henry's Blog! Here you can read about all of the things that Henry is doing and enjoying right now. You can also read updates as Henry receives treatment for Ependymoma. Dad and Mom will post about clinical details, and Henry can write (or dictate) about the fun stuff he's doing and how he's feeling.

Please feel free to comment!

Dad

Friday, September 08, 2006

Lamar: A Brief History, Part I

Tuesday, June 20:
On or about this date, Dad got a call (since Mama was working at Williams-Sonoma) from Spring Lake Recreation, where Henry was attending a summer day camp, to report that Henry had thrown up in the swimming pool. I picked him up and he seemed fine. He simply reported that being in the water made him a little nauseous. There had been a bug going around, and we figured he had one of those one or two-day virus things.

Thus began a period where we would keep him home for a couple of days - he would feel fine: we would send him back to camp...and he would throw up again. Headaches were not very occurrent at this point. He would usually only have one rather modest episode of throwing up, and we would keep him home for at least two days of no vomiting, but after two weeks we went to the Doctor.

Monday, July 10:
We visited our pediatric clinic and saw one of the doctors. She believed that Henry had acid reflux (!) and prescribed Prevacid. She said to call if symptoms did not subside in a few days.

After a couple of days, it appeared that the Prevacid was causing Henry to vomit, so we called the nurse and said we were discontinuing it. We were told that yes indeed, there was a bug going around which might be the source, and (although it would be unlikely to be a cause) there were a few cases of strep reported. Since Henry had a very violent case of strep when he was younger, we made an appointment to test for strep.

Friday, July 14:
We saw Dr. L, and the strep test came up negative. Headaches were occurring, but still infrequent and mild. Dr. L suspected "Abdominal Migraine," and prescribed a Benedryl derivative.

After a couple of days when things seemed to get better, the vomiting continued and seemed to get more severe. The headaches also became more frequent, especially during a B.M. We began to get quite worried, and called Dr. L who scheduled a full blood screening.

Friday, July 21:
When we met with Dr. L, Mama talked with him directly about our growing concerns. Henry was given a full round of blood and urine tests. Some tests needed to go to an outside lab, but a few that were done at the doctor's office came out clean, and Dr. L was fairly confident in his initial diagnosis of Abdominal Migraine.

Saturday, July 22:
Dr. L called us with the lab results and everything was normal. We were very relieved, and continued with his medicine.

He seemed to do better the next few days, and sine we were assured by Dr. L that Henry was in no way contagious, we felt comfortable with moving ahead with our vacation plans on July 28, which included visiting Aunt S and Uncle S outside Atlanta, GA.

All seemed good, although on his last day of camp, we got the call that Henry had thrown up.

Next, Part II: The Vacation

A Brief History, Part II: The Vacation

Friday, July 28:
A few days before our departure, Henry was sad and afraid that his vacation was going to be ruined by the fact that he was sick, but as we started out, we were all in a good mood and looking forward to seeing family in Georgia.

Although the drive to Alpharetta is do-able in a day, Henry had begged us to spend the first night in a hotel; staying in a hotel makes it feel more like a vacation. We stopped at a Comfort Inn in a little town just north of Macon. As we checked in, Henry promptly began jumping on the bed with glee (as Mom & Dad only let him jump on the bed in a hotel). However, after just a few seconds, he stopped suddenly and held the top of his head. Our hearts sank - we knew he was right: he would not be able to fully enjoy his vacation.

Once we made it to the lake house at Lake Lanier, the first few days were great. We met up with Aunt S, Uncle S and Cousin P, and were soon joined by Uncle S, Aunt C and Cousin NC. We had fun catching up and generally making merry.

Despite Mama & Dad's trepidations, Henry had a great time riding in front of the speedboat as Uncle S piloted us around the lake. He survived the brisk and bumpy rides with no apparent nausea or headaches. We did, however, have quite a scare when Mama & Cousin P (being towed behind the boat, riding in a tube-like inflatable raft) hit the boat's wake during a turn and did a violent flip, plunging them into the lake. Both were fine, but Mama took in quite a bit of water.

Sunday night we drove to Alpharetta with Aunt S and Uncle S, and went to the Georgia Aquarium on Monday (see photos in a separate post).

Tuesday, Uncle S took the boys to the "CARS" movie, and then to some putt-putt golf. Henry was a little low on energy, but seemed to be generally fine. Wednesday we planned to take him to Six Flags.

Wednesday morning, Henry threw up several times and his head was hurting. He knew that he wasn't up to the amusement park, but broken-hearted that he wouldn't be able to go. Mama and Dad discussed options, and thought we would extend the trip by a day and take him to the park on Thursday if he felt better. However, by about 11am, he seemed to bounce back, and so we felt if there was a window in which he felt good we should take it.

He was excited to be going, and enjoyed the first ride (a "Log Flume"). But during the long wait for the second ride - a water-rapids - he quickly went downhill, becoming listless with a stomach ache. After that ride he felt so bad - sometimes just lying down on the grass to rest - that we were ready to give up and leave. We made one last stop at Skull Island: a huge series of water slides and sprinklers. Henry lit up like a Christmas tree (he has always loved playing in the water) and immediately set out to try all the slides.

This water slide extravaganza is a parent's nightmare. Dad attempted to follow Henry to the first slide, but was immediately deluged by a group of kids with water cannons mounted on railings, and by waterfalls pouring from upper levels as kids reach the pools at the end of slides. For a brief time we lost sight of Henry, until he came back and found us. We quickly worked out a system where Mama would stay back to get a full view, while Dad accompanied Henry to the entrance of his chosen slide, then wait for him at the end of the slide.

The day was saved. We stayed at the water slides for almost four hours, and Henry had a blast.

Thursday morning, Henry threw up several times. He complained that it hurt his head to throw up. We called Dr. L and made an appointment to see him when we got back. We drove home that day.

Friday, August 4:
Henry was having more frequent headaches. With our Doctor's appointment not until Monday, we called the office to see if there was some other medicine Henry could take with the prescribed Cyproheptadine (for the "Abdominal Migraine"), since that didn't seem to be working, especially for the headaches. Dr. L said to give him Motrin for the headaches, but he changed the Monday appointment to a CAT scan at the hospital.

Saturday, August 5:
The Cub Scouts were scheduled to have an activity day at the local water park. Despite all the recent activity, Henry really wanted to go (he had a fantastic time last year), and we weren't about to deny anything that he might enjoy at this point.

This "Water Fun Park", while MUCH smaller than the one at Six Flags, has three fast slides that land in the pool of a local Comfort Inn. After a couple of hours, Henry came out of the Pool and said the top of his head hurt. When Dad tried to give him Motrin, he threw up. We went home, and he felt fine for the rest of the day.

Sunday, August 6:
Henry woke up and immediately said his head hurt. He went to the bathroom and we could hear him crying in pain. We tried to get him to take Motrin for the headache, but he didn't want to, as by this point he felt all medicine was making him throw up. When he finally did take it, he did indeed vomit repeatedly, but his head hurt so badly that he cried out and tried to hold back the vomit.

At that point, we dressed and took him to the emergency room.

Next, Part III: Lamar Reveals Himself

A Brief History, Part III: Lamar Reveals Himself

Sunday, August 6 (about 10:30 am):
At the emergency room, they were able to perform a Cat scan, since one had already been authorized by our Doctor for the next day.

The ER Doctor was direct: He has a brain tumor. It is big. Call your family.

Since there are no pediatric neurologists at home, the ER called Savannah. Henry was to be sent by ambulance immediately to Memorial Health Hospital.

By 1pm we were admitted into the Pediatric ICU, and Henry was scheduled for a full MRI.

[All right, so this "brief history" is not so brief. I'll cut to the chase and update when I get a chance - Dad]

Monday, August 7:
We met our Pediatric Neurologist, Dr. T. Even without a diagnosis, it was agreed that surgery was necessary. Dr. T explained that the tumor was located in a very delicate area, and that the surgery posed particular risks to the nerves controlling facial movements, shoulder muscles and swallowing. The surgery was scheduled for Wednesday, August 9.

Henry said: "I should name my tumor." What do you think it's name should be? "Lamar," he said.

In the cartoon show Camp Lazlo, the character Lazlo gets a leech attached to his head while swimming in the lake. He decides that the leech is his best friend and refuses to remove him, even as the leech grows larger and leaves Lazlo weaker. Lazlo names the leech Lamar.

Wednesday, August 9:
At about 9:00 am Henry was taken to the ER. It took about three hours to set up the computer for the "stealth" brain scan guidance system, and then two hours for prepping and installing the shunt (to drain excess spinal fluid). The cranial surgery began at about 2pm, and the nurse called at midnight to tell us that they had begun closing.

At 2:30 am, Henry was wheeled to his room in the Pediatric ICU, and we met with Dr. T. The tumor was very sticky and entangled in brain tissue and blood vessels in the left hemisphere of the cerebellum. Dr. T felt that he had removed 80 to 85% of the tumor without any neurological damage to Henry.

Thursday August 10:
Initial exams showed that Henry came through the surgery quite well, although he felt bad, with particularly bad nausea (!). He suffered some double vision and it was an effort to speak, but he could speak quite clearly if he wanted to.

The Pathology report confirmed a diagnosis of grade 2 lateral emendymoma, a rare, slow growing tumor. Grade 2 is a "mostly" benign classification for what is technically a malignant tumor. The lateral qualifier means that it is angled off-center to the left, causing it to be more entrenched into brain tissue and blood pathways.

Next, Part IV: Now What?

Thursday, September 07, 2006

Jellyfishing

We visited Aunt S and Uncle S in Alpharetta, GA in July. Henry and his cousin P had a great time at the Georgia Aquarium!



Dad

Friday, September 01, 2006

Tomorrow: Begin Cycle B

Tuesday at 9am we get admitted back into the hospital. The first treatment involves a day of hydration, blood tests, and a dose of chemo.

Meanwhile, Henry has been back in school and, although he's lost most of his hair, he's feeling good. He has caught up with spelling, working on reading for a book report, and of course, playing video games. Mario Bros. are the preferred choice at present, with Paper Mario being particularly in favor (although Mama & Dad prefer Mario Party 7).

New video games were part of the consolation prize for Henry going to the hospital initially. Dad picked up 5 Gamecube games on the way to Savannah. Lucky for us, the hospital has a few donated Nintendo systems on carts that could be wheeled into the rooms in PedICU. That helped save us those first two weeks.

-Dad

Light Posting This Week...

Dad's in tech rehearsals for West Side Story, and Mama's working on painting the set when Henry's in school. The show opens Friday the 29th.

Henry doing well, although he felt down today and stayed home from school.

Back to the clinic for blood tests next Tuesday.

-Dad

A Good Weekend

Henry has been feeling great, had a lot of energy and has been in a good playful mood. He went to the beach Sunday, finished a book for school and built a city around a train set that fills roughly the middle third of our house. Aside from a few mild waves of nausea that passed quickly, the only trauma has been the daily dose of Chemo by mouth: a very large, slimy, hot-dog-shaped pill that Henry simply refers to as the "P."

Back to school this morning. Tomorrow, a visit to the clinic for our last scheduled IV dose of Chemo.

-Dad