Meeting with the Oncologists

Maegan and I met with the team of Oncologists this afternoon, headed by Dr. Rubin.  He was able to sit down with us and discuss with us the plan for the chemo.  He went on to explain that for Abigail's type of tumor (the technically full name being Diffuse Intrinsic Pontine Gliomas -DIPG) the actual treatments are very thin.  He then went on to explain that the best thing for Abby's tumor is a clinical trial of an experimental new drug for cancer which is used in combination with radiation therapy.  The name of the drug is Suberoylanilide Hydroxamic Acid (SAHA, Vorinostat) which will be used at the same time as the radiation therapy, and then be continued for one year after radiation.  Abby is to be in Phase I for the SAHA.  With this, the goal is to find the highest dose of Vorinostat that they can give safely during therapy.  There will only be between 9-15 patients taking part in this part of the study.  The reason for this clinical trial is that SAHA has been effective in other types of tumors, but has not been approved by the FDA yet.  The goal of this is, to basically improve the effectiveness of the radiation therapy.

The way the explained it to us was that each set of  genes was built in with, in effect, genetic on/off switches. When a group of cells get together at conception, the cells switch on certain switches and leave the others off, resulting in us.  With tumors, and especially brain tumors in/on the brain stem, treatment options are really limited.  SAHA is designed to turn off the genetic "restore" switch that is within the tumor.  Radiation is designed to kill and shrink the tumor.  The problem is that radiation alone just hinders the growth and is temporary.  SAHA is designed to turn off the "restore" so that when it is killed by the radiation, it stays dead and gone.

We were told that Abby should not have too many side effects.  The expectations are lack of energy, sleepiness, nausea, and possibly vomiting.  Our doctors, including Dr. Limbrick, said that they will be closely monitoring Abigail to make sure that there are no serious adverse effects from the treatment.  

They all seem really optimistic of a positive result from this treatment.  Dr. Limbrick told me in private later that if his child had this type of tumor, he would feel comfortable putting her into the trial.   That meant a lot to us.

We have prayed about this and feel that the Lord has timed all of this so that a) Abigail would be covered by insurance when this manifest itself, b) that we were close enough to St. Louis Children's Hospital to come here where these doctors are all together to tackle this problem, and c) that this clinical trial was set up exactly at this time so that my Abby could be a part of it.  We have known from the very beginning that Abby IS going to beat this thing, and a your faith and prayers during this time are the main reason for this!!  Keep praying and keep the faith!!