Henry's Blog

Sunday, March 16, 2008

"Love, Hope and Prayers"

It was the end of a very long, very hard two weeks. Henry's spirits had bottomed out. The new treatments leave him nauseous and very tired, and even if he had more energy, the delights of Durham are few for a middle-schooler. He was very homesick. Dad left home at 4:30am on Friday [May 14] to meet Mama and Henry at the clinic, help check out of the hotel, and share with Mama the long drive home.

Henry's mood improved almost immediately once on the road. He joked, napped, chatted, enjoyed a stop at Taco Bell, and napped some more. But nothing made him feel better than running up to the house and entering the front door. Among the joys waiting was a package from his Godmother Nancy, Godfather Charlie, Aunt Lauda, Uncle Bill and Cousin Willie. Inside he found the beautiful quilt pictured above. On the back it reads:

This Prayer Quilt was made for
with Love, Hope and Prayers.
Each knot represents a prayer said just for you.

January 2008

The Prayer Quilt Ministry
Church of the Ascension Montgomery, AL

Also waiting (besides the dog and cats was a package from our Seattle friends, who sent a veritable treasure chest of Nintendo goodies, including a Wii carrying case two Nintendo hats, and, best of all, a pre-release copy of the much-coveted Super Smash Brothers Brawl, autographed by Sakuri, a famous game designer for Nintendo. He also got a great gift bag for St. Patrick's Day (his favorite holiday - after Christmas, natch!) from Cousin Tay.

Henry has hardly stopped smiling since he got home, and all of us continue to be astounded by the continuing outpour of wishes, cards, gifts...and the uplift that comes with it. We have simply been incapable of keeping up with the due gratitude to the many, many thoughtful people who follow Henry's story and urge him forward. Please know that we think of you in our hearts everyday, and in our own feeble way offer love and wishes in return.

Monday, March 10, 2008

Reservoir of Dreams

"No matter how full a reservoir of maxims one may possess, and no matter how good one's sentiments may be, if one has not taken advantage of every concrete opportunity to act, one's character may remain entirely unaffected for the better." - William James

Thursday, March 06, 2008

My, Oh My, Ommaya

Yesterday we met with our Duke neurosurgeon, Dr. G2 (I guess we've pretty much made it through the alphabet). We went through all the procedures, toured the facility and signed the consent forms. Henry examined one of the Ommaya reservoirs and viewed a video showing their use. The results of the blood test on Monday showed an increase of anti-coagulants which Dr. G2 felt was from the heparin flush through the port where the blood was drawn. He took a new sample from the arm, and we went back to the hotel. While Mama and Dad debated how to spend the afternoon, Henry fell into a deep sleep. Then the clinic called to say that while the new blood test was greatly improved, it still showed a high amount of anti-coagulants, and they wanted to take another sample at 5pm. So we go to the surgery clinic on the third floor at 4:30 and they tell us their lab is closed but, no problem, the lab on the fourth floor is still open and we get the test.

We got up at 5am this morning [March 7] to get to the hospital at 6:15 for pre-op. Just as Henry is getting his anesthesia, the nurses and residents are in a tizzy. Last evening's blood sample still tested slightly high for anti-coagulants so Dr. G2 ordered platelets for a small transfusion during the surgery, but since the blood was drawn in a different lab, the sample wasn't screened for type so the platelets weren't ordered. They told us that the surgery would be delayed at least an hour. Eventually, Dr. G2 decides not to delay. He ordered the platelets and started the proceedings with a spinal tap requested by Dr. G(1), who did not get enough fluid from Tuesday's draw. This time, however, Henry was happily sedated for the lumbar puncture.

Two hours later Henry was safe and sound in recovery. We transferred to a ward room, got a CAT scan to check the reservoir placement, and got released at 5pm.

Back at the hotel Henry is tired and sore but doing great. He's looking forward to a big event this weekend - a major new release:

Wednesday, March 05, 2008

Duking It Out

We completed the five hour drive to Durham at about 6:30 pm Friday, February 29. We checked into the Holiday Inn Express (thanks, Uncle Tony!) and feasted on take-out camp stew and BBQ from the "Hog Heaven" across the street. We turned in early to catch up on our beauty sleep and to be refreshed for the full brain and spine MRI scan scheduled for 7am on Saturday.

For reasons understood by only a few organizational bureaucrats, Duke cannot provide anesthesia for several procedures that are elsewhere routinely provided for pediatrics, so Henry had to lie perfectly still for a one-and-three-quarter-hour MRI on Saturday. Sunday we spent at Durham's Museum of Life and Science which boasts, among other things, a wonderful butterfly pavilion.

Monday we had a routine physical and met with Dr. G. He took Henry off of the Tarceva, lest it interfere with the anticipated Topetecan treatments. Dr. G paradoxically said that Henry's MRI results from Saturday looked good, but revealed a new tiny spot in the fourth ventricle (since November). We reviewed the schedule for the next few days and signed the consent forms for the study. Later, we moved to a hotel with weekly rates that is near he hospital.

Tuesday was the flow test. Again, Henry was unsedated during an extremely painful lumbar puncture for a spinal tap and infusion of a radio-isotope measuring flow of the cerebrospinal fluid (csf). It was discussed with Henry in advance and, while he was not at all happy with the idea, he understood and was accepting - until the moment of truth when he panicked about the numbing injection (he had a bad memory of a painful numbing injection before his first surgery). Dr. G thought to offer some cold "freezy" spray to help numb the area instead of the injection and Henry was able to calm down and get his game on. We had been told by Dr. G that after the test we could leave the clinic and return in three or four hours for scans that would measure the flow, but the technologist said no, he had to lay flat on his back (on a gurney in the hallway) for four hours so as not to interfere with the fluid flow. Once again, Henry showed his grit and came through (and thank god for Nintendo and the iPod).

Prelim results had him passing the flow test which allows him entrance into the trial. Today [Wednesday, March 5] we went in for a follow up scan that apparently was good enough that we don't need any more scans to verify our qualification for the study. Tomorrow we meet with the neurosurgeon for pre-op, discuss the next day's surgery, and sign the consent forms. Friday is the surgery: installing the Ommaya reservoir - a small input device that will be implanted just inside the skull conecting directly to a ventricle that is manufacturing the csf, and will be the point of delivery for the drug Topotecan. We have the weekend to recover, and then bright and early Monday, March 10, we begin the first treatment which is followed by tests throughout the day to measure drug dispersion and concentration. Treatments for the rest of the week will be simpler and shorter.

Dad will probably drive home early Tuesday the 11th, and return to Durham late Friday or early Saturday to pick up Henry and Mama and bring them home.

For one week.