Trying To Keep Up

Managing the changes in Henry's current treatment is like holding on to mercury. We found that the phase one study at Duke that we were entering is temporarily closed while adjustments are made to the toxicity levels of the drugs. Meanwhile Henry will be on the Avastin-CPTS11 therapy. We all agreed that it was wise to put in a new port, but, since the Avastin inhibits healing, would require at least two weeks post surgery before that can be administered.

It was decided to fly Mama and Henry back home a day early and install the port asap in Savannah. We got an appointment for this morning (Wed, 11/28), and the first round of CPTS (without the Avastin) will be administered here. The Avastin will be added two weeks later.

It may be that all the treatments of this two-drug plan will be given in Savannah.

MVP

To say that Mama is the Bedrock of this family is beyond understatement. Throughout Henry's illness, Mama has shown miraculous courage and resolve as she takes the lead in dealing with doctors and hospitals, navigating the waters of different treatments and medications, and keeping the schedules and records intact.

She is the calming voice for Henry and the unwavering supporter of Dad's work demands. She is the sole caretaker, providing comfort and security, when treatments take Henry away from home. Her strength is inspiring and her reserve seems limitless.

She is our heart.

And we love her.

A New Treatment Plan

We've found that Duke has some unique ideas about new defenses against Lamar...

There actually has been a change in our treatment plan. Henry has to wait three or for weeks to be entered in the phase one clinical study that he is being tested for on Monday. In the interim, he will be given a different chemo drug combo - Avastin and CPTS-11 - starting Tuesday, November 27. One complication is that Henry had his port removed after finishing his treatment at St. Jude because, well, we thought we were finished. The main chemo drug for this new treatment inhibits healing, so Henry can't have any surgery, and thus can't have a new porta-cath installed. He will have to have a line inserted above his left elbow that travels up through the vein in his arm, and then into the artery above his heart.

He will get one dose, then he and Mama come home on Wednesday. The next treatment will be two weeks later. Beyond that, we'll wait and see. We should know more in a couple of days.

The Spawn of Lamar

As many of you know, Henry revealed recurrence of tumor in both the brain and lower spine. The tumor in the spine was generating extreme pain, and he began radiation in mid October. The brain area, however can not be radiated, since he just finished radiation in that area in March. The waiting period for re-radiating an area is at least 2 years...three is the preferred waiting period, as the risk of tissue death is very high.

Neither area can currently be treated with surgery.

A brain scan taken after his October 4th scan shows significant growth in the tumors in three weeks.

Chemo treatments have limited success on recurrences of this tumor type, but there is no other treatment available. We have sought out clinical trials at Johns Hopkins in MD, Dana Farber in Boston, MD Anderson in TX, Aflac Children’s Heath Care Center in ATL, and the Neuro-Oncology / Blood Brain Barrier Program in OR. Following an on-site exam and interview we intend to enter a phase one trial at Duke University Hospital in NC.

The trial consists of flushing the spinal fluid with an experimental medication through a small reservoir implanted in the brain. Since the tumor spread through the spinal fluid to the spine and previously unaffected areas of the brain, the drug will flow through the spinal fluid and treat all the infected areas through the same mechanism as the tumor seeds.

The two main advantages to this trial are that the entire affected area will be addressed, and that there will be no waiting period following his current radiation (as many trials require).

Henry needs to take a spinal flow test to qualify. The test will be on Monday, Nov 26. in Durham, NC. If successful, he will begin the treatment shortly after. The first phase involves treatment in Durham for two out of 4 weeks. The second phase involves treatment in Durham for two out of six weeks. The third phase involves treatment in Durham one week out of every four for 44 weeks.

Thanks to all for support, wishes and prayers.

Love,

Terry, Cynthia and Henry