Henry's Blog

Sunday, January 27, 2008

Battling Uphill

Henry finished his first week of the latest radiation treatments last Friday. He seems to be feeling few side affects: mild fatigue and the requisite nausea (no actual vomiting).

We spoke with Dr. G at Duke and decided to start a Tarceva regimen. Tarceva, originally a lung and pancreatic cancer medication, has started being used in some pediatric head and brain cancers. It has few and mild side effects, and should not interfere with the radiation treatments.
We feel it's best to use this time as pro-actively as possible and not wait for radiation to be over before we at least make an effort to treat the systemic source of this disease.

This imperative became more obvious as Henry started feeling some lower back pain in the same place he had last fall - the same place we just finished treating. Our radiation oncologist was puzzled, as the recent MRIs appeared to show the area clear. He was going to meet late Friday with the radiologist to review the MRI to see if there is anything hiding in there. We haven't heard back from them yet; It probably got too late into Friday night. But, in the words of one of our many doctors, pain is worrisome.

On the good news front, despite the difficult circumstances and sporadic attendance, Henry got straight A's on his report card. There were a few teachers who could not give him a grade since he couldn't get enough work turned in, but once again Henry proved he can hold his own under the most challenging of circumstances.

He really is an amazing kid.


Anonymous Anonymous said...


is the website for Loma Linda University Medical Center. I met a man whose sister had brain tumors and he highly recommended this place. I'm not sure if you know about it so I am passing it along.

Fran (Benjamin's mom)

6:19 PM  
Anonymous Anonymous said...

Amazing, gutsy, determined, funny, talented...and our hero.

XO, Sharon, Kevin, Aidan and Sam

7:39 PM  
Anonymous Anonymous said...

I think Henry is amazing too.
Cynthia said the Painted Desert Soup is his favorite at Santa Fe - here's a recipe I found.


Fran (Benjamin's mom)

1:42 AM  
Anonymous Clay said...

Henry obviously got the smart genes from both his parents. Best wishes from your old ops friends. - Clay

5:08 PM  
Anonymous Anonymous said...

I heard the good news tonight that Henry is going to be starting the trial. You all, and your doctors are in our thoughts and prayers. Because you are in a trial, I thought this web site and the work these people do may interest you; it is the Abigail Alliance http://abigail-alliance.org . They work to get the newest drugs to patients. God bless you all. Deb R.

9:02 PM  

Post a Comment

<< Home