Happy Halloween!

"Spear Guy" from the Mario Bros. Monster Gallery.

Life Is Good

Since the end of Henry's Chemo treatments we have basically been laying low and making the most out of this respite. Henry, by and large, has been feeling terrific. We took great pleasure in a beautiful sunset dolphin-watch cruise (courtesy of an orchestra member from WEST SIDE STORY), and, while Henry enjoyed a sleep-over, Mama and Dad luxuriated in an evening out. Since we expect to be in the ICU for our wedding anniversary, some gracious friends arranged VIP treatment at a lovely restaurant overlooking the sound (and did I mention, our local oysters are wonderful...especially when poached in champagne).

Mostly, though, we've just been savoring our normalcy: simple dinners, doing homework, and delighting in the joys of an enchanting early fall. Few things have been as comforting as cuddling together and watching the Disney Channel with a big bowl of popcorn. Family, friends and various institutions have continued to provide moral (and sometimes financial) support. It has been a very special time.

This week has brought a more hectic pace. With Dad's work gearing up full again, a big school science project, and last-minute Halloween preparations, we must prepare for the big hospital visit coming up.

Next week starts a new chapter. We are anxious, frightened, and hopeful. And we are ready.

Mama's Poet

Posted by Mama

Save the Date

Surgery is now confirmed for Wednesday, November 8. We will go to the hospital Monday morning for pre-op (more blood tests and what-not) but won't be actually admitted to the hospital until 5am (!) Wednesday morning. Henry will have his head mapped with sensors for the Stealth Guidance System (Yes, that's the real name...sort of a GPS for the brain!) and then sent to yet another MRI at about 7am. He'll probably be in the operating room by 9am, but last time it took almost three full hours to configure the computer for the Stealth before they actually went in. Recovery time should be five to seven days following the surgery.

Lamar Blinked

Last night Henry stopped eating after 7pm, anticipating the anesthetic required to endure a three-hour full spinal MRI. Following our blood test at the clinic, we arrived for the MRI to discover that the order was only for a cranial scan and that no anesthesiologist was scheduled. By the time one could arrive it would be too late for a meeting with the surgeon. We proceeded with the shorter cranial scan that did not require sedation (and was all we really needed anyway). Once again, however, Henry was denied food and had to endure a procedure (access to his porta-cath) for no reason. Henry did great with the thirty-minute MRI and we then went to the neurological center to meet the surgeon, who gave us a quick assessment after a brief view of the MRI results. More information will come following a complete analysis.

In a nutshell: the tumor has shrunk about 30%. This falls right where we had been led to expect/hope for; no one believed in a chemo miracle that would shrivel the ependymoma to nothingness. The goal was to shrink the tumor for easier surgical removal, and that was achieved. Perhaps more important, the scan suggests the possibility of some consolidation of the tumor. That would mean the tumor is pulling itself together in places and, perhaps, pulling away from some brain tissue. That would be an enormous benefit to the surgery, and increase the chances for removing the tumor without damaging parts of the brain. This effect, however, will only be confirmed during the actual surgery.

The remaining tumor consists of two parts connected through a small chamber. The first should be easier to access and easier to remove. The second is in a more precarious place, and positioned next to the brain stem. The small connection through the chamber may exist in a "blind spot," that may not be visible during the surgery, and removal in that area only confirmed by a post-surgery MRI.

Follow-up therapy still plans to include standard radiation for several weeks. Another possible follow-up therapy is the "Gamma Knife," which sends multiple, simultaneous low doses of radiation carefully pinpointed. Where these low doses converge a larger dose is created, causing a high application of radiation at the target with minimal effect on the surrounding areas. This technique is best for recurrence and tumors smaller than one centimeter.

For now, we still await the scheduling of the next surgery. Our surgeon wants to make sure that Henry is fully recovered from the chemo and is considering around November 1 (subject to discussion with the oncologists, radiologists, his own surgical schedule, etc.).

The absence of an earth-shattering miracle has left us somewhat less than elated. However, we received no bad news, just the sober reminder of the reality we face. And the good news, that the treatment plan is working, is very good news indeed.

We had a lot of prayers, positive vibes, and wonderful thoughts coming to us all day today from family, friends and individuals who have been so concerned and dedicated to supporting Henry's progress.

We really could not do it without you.

Entering the Celebratory Season

Thursday we went to the clinic for blood tests and, although on the way back up, Henry's white blood counts "just missed the cut," as the doctor said, so he will not go back to school before Wednesday.

Henry's teacher came for a homebound session on Friday. He did excellent on his spelling and vocabulary tests.

Last night we dug out the boxes of Halloween decorations from our storage shed. Henry has been feeling better every day, and was in a fun and feisty mood all evening. He loves Halloween, and couldn't wait to get the decorations unpacked. We decided to plan some extra in-house activities, since we don't know how Halloween will land in the surgery and hospital schedule. We will find out next Tuesday, but surgery could occur as early as the week of the 16th, with at least a 10-day hospital stay.

This MRI and consultation seemed so far away while we were dealing with the day-to-day chemo issues, and now that the day is suddenly upon us we parental units find ourselves swept up in anxieties that have been kept at bay for a couple of months. Nevertheless, we are ready to move forward and have every reason to hope for the best.

From the Scrapbook

Henry's photo of a bug on our glass door. Henry calls it: "Praying for a cure."

A cornicopia of hats...

Henry wupping Dad in SpongeBob Monopoly...

Chemo Complete!

At about 6pm Tuesday, with the taking of the final dreaded "P," Henry finished his scheduled chemo treatments! His reward is a new Nintendo DS portable game system and a lovely (and I'm sure delicious) watermelon cake from Publix...The cake remains untasted at present. He had a great first Homebound schooling session with his teacher, although we learned just how much make up work he has to do. We are very proud of him today.

Monday we went to the clinic for blood tests. He was feeling particularly nauseous and hadn't really eaten in two days. He couldn't even take his anti nausea pill without vomiting it up. The clinic was very crowded, and we spent several hours in the room where they usually just check the vitals. At one point there was a flurry of activity: doctors, nurses and technicians rushing to a room to deal with a "major emergency." When we got our test results, we learned that Henry's platelets were good but since his white blood count was extremely low he would have to stay home from school, avoid crowds and watch for fever. We will test again on Thursday to see if counts are on the way up and he can go back to school.

When we got home, several boxes were waiting on the front porch containing a selection of hats from around the county - even one from Italy! One of our family friends has challenged many acquaintances to submit hats from coast to coast. It was a delightful surprise.

It is at times of hardship that you learn who your friends are, and we have found ourselves blessed with the best of friends indeed. Henry's aunts, uncles and cousins have been so generous with their time, thoughts, prayers and good wishes, not to mention calls, emails, cards and gifts. Friends, colleagues and co-workers (past and present) have appeared with offers of meals, transportation and caretaking as well as words of concern and encouragement.

We also have been graced with the outpouring of support from a network of extended family and friends - some we know fleetingly and some not at all. Congregations have been mobilized on our behalf, providing us with encouragement and support (and hats!). It has been wonderful and humbling to be on the receiving end of such an outpouring of attention and concern. Our appreciation and gratitude are beyond measure.

We are very grateful to our Seattle friends who, while fighting their own battle with cancer, have given so much advice, guidance, strength and comfort.

We are not alone. We are loved. And we love you all.


[Note from Dad - to protect privacy on the internet this blog does not identfy parties by name.]