O GIVE THANKS UNTO THE LORD,
FOR HE IS GOOD...
See: www.jamesneubauer.blogspot.com

MRI Scans

Welcome to James' page.
It is our prayer that you will see what God has and is doing for us. One day, James said to me, "Why do I have to have a brain tumor?" I told him that when God was looking for someone to use - to show the world what God could do when you trust in Him - he chose James, because He knew that James would trust Him to take care of him. James thought about that ... and boldy said, "And I will!" This is what he is hoping to show you - how God has taken care of him.

James was diagnosed with an optic pathway glioma in December of 1998 when he was 11 months old. After having shunts placed for hydrocephalus, he began chemo in January with carboplatin/vincristine. He did well on this with approximately 80% shrinkage of the tumor by the time it was completed. We honestly believed that what was left was just dead tissue.

But we soon learned that that is not usually the case. James' tumor remained stable for two years (so we thought). At this point, we started him on a Phase II clinical trial of vinblastine, which was not successful. James finished that chemo on New Year's Eve of 2003. We had a big party!! Aunt Lisa came to be with us on our last chemo day and brought James a two-wheel bicycle, which he had really been wanting.

The first MRI after finishing chemo showed possible growth and the second showed definitely that the tumor was growing. The tumor, at this point, was bigger than when originally diagnosed. So needless to say, James was going to need further treatment. That is when his doctor recommended radiation. Although we have always loved and respected Dr. Goldman, as we still do, we were not ready to try radiation.

Recently, we took a closer look at his actual MRI scans from the two years he was off and the year he was on vinblastine - to see where this growth came from. Standard procedure in oncology is to report "stable disease" when the change is anything less than 25%. It amazes me that you will quickly here of any shrinkage - no matter how small. Yet the tumor can be consistently growing and you will only hear "stable," as long as it isn't more than 25% at one time. This is what happened for those two years James was off treatment. The tumor had simply - SLOWLY - grown back, but never more than 25% between each MRI - thus we were only ever told that it was "stable." During the vinblastine clinical trial, the tumor continued to grow, but at a much slower rate - with only the 6 month MRI really showing a change from the previous scan - yet not enough to report anything but "stable." All of this gave us a tumor that was bigger than when diagnosed.

So in searching and studying (and I must add MUCH PRAYER), we decided to try a treatment called antineoplastons at a clinic in Houston, Texas, The Burzynski Institute. James was enrolled into an FDA-approved Phase II clinical trial. We were gone to Texas for the entire month of May of 2004 to get James started. Getting started was a little rough, but he is adjusting well. He carries around his backpack like a little trooper (which holds a pump and the medicine which is infusing 24 hours a day).

Dose ~ A10 336 and AS2-1 32
Next MRI is in early March

James' sister, Johannah, was diagnosed with BRE (Benign Rolandic Epilepsy) about four years ago. At that time, she only had what is called petit mal seizures with her eyes fluttering. This did not really impact her life much and the Lamictal decreased them to a great extent, except when she was stressed. At the beginning of this last summer, Johannah surprised us with a grand mal seizure. They added Keppra to her medication, but these grand mal seizures continued and even became more frequent. They stopped the Keppra and have now added Neurontin, which helped for a short time. We have now added an experimental drug (approved in Europe and Canada, but not the US yet) which seems to be helping. I am hoping that we can achieve some stability before school starts. She also gets Klonopin or Diastat as a rescue drug to stop the cycle of seizures when they start. Prayers for her safety while they try to get these seizures under control are greatly appreciated.

Johannah's medications:
Lamictal 150 mg twice a day
Clobazam (Frisium) 20 mg twice a day
Klonopin/Diastat p.r.n. for breakthrough seizures

James has another website that I started so that it would be public for fundraising (which I have not had to do yet). Please come and check the updates and drop us a note. We love to hear from you and know who is praying for James and Johannah.
www.jamesneubauer.blogspot.com

"THE LORD HATH DONE GREAT THINGS FOR US; WHEREOF WE ARE GLAD."
PSALM 126:3

Journal

Tuesday, January 29, 2008 10:14 AM CST

MAKE SURE YOU CHECK OUT HIS NEW WEBSITE.
I DON'T UPDATE HERE MUCH.
IT IS AT: www.jamesneubauer.blogspot.com

HAPPY BIRTHDAY, JAMES!!!

The other day I was heading to the bathroom and I passed, in the hallway, the place where I had just finally cleared the mountain of laundry that had blocked it for over a week. There sat yet another blanket and pair of wet pajamas...and it made me think:

~Because we have James, there seems to always be another pile of laundry to be done.
~Because we have James, homework time takes on a whole new meaning.
~Because we have James, I get calls from the school often to tell me that his pump isn't working.
~Because we have James, Johannah has someone to complain about in the bedroom.
~Because we have James, we all - at times - have a "special" aroma.
~Because we have James, we spend holidays in the hospital and endless nights at other people's houses.
~Because we have James, we know more about the anatomy of the brain than most.
~And because we have James, we have bills coming out the "wazoo."

BUT....then I thought.....

~Because we have James, Jon has someone to go candy selling with (that's significant if you know my Jon).
~Because we have James, we got to meet Dr. Mary, Kate Onkka, Peggy, Loice, the Smiths, and the many others that have become our friends.
~Because we have James, we have learned to be patient with those that aren't the same as us.
~Because we have James, we spend holidays giving gifts to those who spend holidays in the hospital.
~Because we have James, we have the opportunity to help others that are heading down "our road."
~Because we have James, we have seen God work in ways that we never could have otherwise.
~And because we have James, best of all, Mom still gets lots of hugs and kisses.

So, when I see that blanket in the hallway, answer that call from the teacher, stay up until midnight so he can rewrite his spelling for the fourth time, smell that "aroma," or put a few more bills on the piles in the office - I say,

"Thank you, Lord.....that we still have James."

Happy 10th Birthday, Buddy

Read Journal History

Hospital Information:

St. Anthony Memorial Hospital
301 West Homer Street
Michigan City, IN 46360
219-879-8511

Links:

E-mail Author: d_lneubauer@hotmail.com

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