Henry's Blog

Sunday, November 19, 2006

Going Home

Dr. T said we can go home tomorrow.

Henry is doing very well. His doctors, nurses and therapists all marvel at his overall condition following such a delicate but grueling surgery. He does, however, face some difficult recovery. Besides the expected post-surgery aftermath of pain and weakness, those nerve centers that were most vulnerable to the procedure have left some residual effects. These include dizziness, fuzzy vision, some hearing loss, coordination of the left side, and difficulty swallowing. How long these linger is anyone's guess. Some, such as the hearing reduction, may be long term. But we have seen progress, albeit in teeny-tiny steps, just about every day.

With each passing day, we develop a greater understanding and appreciation of the great gift we have been given.

Wednesday, November 15, 2006


Henry had an MRI at 2:45PM today. Dr. T happened to be on the floor and immediately examined the results.

There are few certainties when dealing with these issues, but when the worrying, cautious, and careful Dr. T says "I don't think there's any tumor left," you can pretty much take that to the bank.

Henry is recovering remarkably well, although he is in pain and will struggle for a while with some motor skills, especially on the left side. These should be minor and not long-lasting. Even Dr. T was impressed, watching Henry touch his own nose and then touch the doctor's fingers. "Take a look at that," he said proudly to his assistant.

It's hard for Henry to swallow and talk, having had a breathing tube down his throat for two days, but he talks (hoarsely) when he needs to and as I write this is enjoying a grape popcicle.

There will be some debate over the next few days over the risk/benefit ratio of radiation therapy. If we go that route, it could start in two weeks.

We are overjoyed. We have felt all the love and good wishes from so many wonderful, gracious people. We owe you all so much.

During our stays at the hospital, we have shared the ICU with some dear families who have not been as fortunate as we are. As our hearts go out to them, we recognize the magnitude of our blessings.

This will be a very special Thanksgiving.

Tuesday, November 14, 2006



Twenty-Two-and-a-Half Hours Later...

4:00 AM:
Dr. T came up and told us that , although he could not be certain, he had done his best to achieve his goal of removing all of the tumor without harming Henry. Only time, and still more tests, will tell. Dr. T was going to observe him as he came out of the anesthesia, to look for any signs of post-surgical stroke due to possible trauma of a main artery.

5:30 AM:
We finally join Henry in his room in the Pediatric ICU: air tubes, nasal clearing tube, catheter, BP monitor, heart monitor, blood oxygen monitor, thermometer, 5 IVs, looking battered, bloodied and beautiful.

6:30 AM:
With Mama in a cot and Dad in a chair:
Good Night.

Monday, November 13, 2006

Day of Surgery: Running Timeline

Updated 2:10 AM

7:01 AM
Henry went to radiology for his MRI. This is the roadmap for the Stealth Guidance System during the Surgery. Henry, being an old pro of the MRI, of course did great.

As we left Radiology, our surgeon, Dr. T, joined us and we spoke for a while. He was refreshed and seemed very prepared. He has allowed 12 hours for the surgery so that he can take his time. He is determined to get it all today.

7:57 AM
Henry left Pre Op and officially entered the OR at 8:07 AM. There will be between an hour and an hour-and-a-half setting up the equipment. The nurse will call us when the surgery actually begins and give us hourly updates.

9:40 AM
The Surgical Nurse called to say that the surgery had begun about 9:35 AM and that Henry was doing great, his vitals were all good and everything is proceeding as it should.

"He's a very colorful character," she added, "and he kept us all very entertained," before he went under the anesthetic.

11:02 AM
Nurse S called to say that Dr T had just set up for the microscopic work and proceeding to the tumor. Vital signs remain strong.

1:20 PM
Dr. T has reached the tumor and is peeling away microscopic segments slowly and diligently.

4:30 PM
Nurse S called to report that surgery is continuing without incident. It remains, however, very slow going. Henry is on some kind of motorized, pivoting bed that can rotate to different angles. Dr T has been moving him around a lot, examining and taking different approaches. When asked, Dr. T said it was going "pretty well." Coming from a natural worrier, we'll take that as a good sign.

5:30 PM
Nurse S reported that Dr. T believes he has removed about half of the remaining tumor at this point. Henry is still in good shape with strong vital signs, is comfortable and "toasty," and, except for its length, the surgery appears to be continuing well.

8:30 PM
Nurse S asked Dr. T how we are doing and he told her "we're making progress."

11:00 PM
Nurse S: Dr. T paused to have a bagel and some juice. He feels that he has two areas remaining that need to be reached. He is incredibly dedicated to removing as much tumor as humanly possible.

1:05 AM
Nurse S called to say that she thought we were honing in on the last stages of surgery. Dr. T continues to search every nerve fiber for tumor material, but the bulk of it has been removed. Closing has not yet begun and will take at least another hour, so we still have some time to go.

1:50 AM
Closing begun. Dr. T likes to stay with the patient until he starts to regain consciousness. Then, Henry will be brought up to PedICU.

Here We Go...

In Pre-Op, waiting for the MRI.

Monday, November 06, 2006

Another Bump in the Road

As we were driving in to the hospital for pre-op this morning, we received a call from our surgeon's office. Due to a death in the family, he will be traveling to Georgetown, South Carolina on Tuesday and has rescheduled Henry's surgery for Monday, November 13.

Although this has jacked up our anxiety level a few degrees, we love our surgeon and send him our prayers and condolences.