Burzynski Clinic 30th Anniversary Gala

What a wonderful time we had - thanks to Dr. Mary Brittain. Here are some pictures from this wonderful evening. I cannot tell what it meant to be able to meet so many of the people that we have known for the last three years only through phone calls and emails. I am thankful for the opportunity to meet them in person and thank them for paving the way for us.

Dr. Brittain (Mary) - right, Dr. Johnson (Kimball) - center, and Doll (Mary's sister) - left, with James. Mary is being treated by Dr. Burzynski for a low grade astrocytoma.

Thank you for making this wonderful weekend possible.

Joe, Johannah, Leiann, James, and Jodi (Gold) Fenton. Jodi had a anaplastic astrocytoma. She has been cancer free for six years now.

Dr. and Mrs. Burzynski

Erika and her father, Ken, who just started treatment for lung cancer.

James at the Gala

Johannah

Joe and James

The whole bunch of us!

Having fun at the Gala (I did NOT do that)

Paul Michaels with the Burzynskis. Paul had the same tumor as James. He was on treatment for about 10 years and is now tumor free. He is getting ready to finish college. Thank you, Paul and Mary Kay, for paving the way for us.

Jessica Ressell and her little boy. Jessica had a brain stem glioma. She finished treatment with antineoplastons in February of 1999 - cancer free for at least 8 years now.

Dustin Kunnari (he is so tall). Dustin had a PNET tumor. He has been in remission since September of 1995 - 12 years now!

Sophia Gettino and family. Sophia had a pineoblastoma and started antineoplastons at only 1 years old.

Mary Jo Seigel had non-Hodgkin's lymphoma and has been cancer free for more than 15 years now.

Tracey Edry was treated for breast cancer and has been in remission for 2 years now.

Trip to Texas

Our trip started with a flight to Atlanta where we met up with Dr. Brittain and her friends, Dr. Johnson (Kimball) and Mary's sister, Doll. Then we flew to Houston together and "raced" to the clinic.

I was so glad for the opportunity to talk with Dr. Burzynski. James tumor is 25% smaller thus far - heading in the right direction and James is tolerating the treatment well, so we will continue on as we are. Dr. Burzynski talked about a gene therapy that he is working on and it is our hope and prayer that this might be available for James sometime next year.

I talked with Dr. Burzynski about my opinion that Lupron causes hypothalamic tumors to grow and he definitely saw the potential. We talked about other options for kids with precocious puberty, if they were to not use Lupron. Although the option doesn't exist (a GnRH antagonist), Dr. Burzynski said coming up with one (or some sort of solution) was possible. That was exciting to me.

Then we headed out to Round Top, Texas (population 77 on a busy day) for a few days of relaxation. Round Top is an old German settlement. This place was so nice!!!! Thank you, Dr. Brittain, for getting it for us. Here are some pictures of our wonderful Innkeepers and our stay.

Wayne and Elisa, the Innkeepers (www.roundtopbnb.com)

Arriving at the Sunday Haus

James and Mary

Johannah, James, and Joe with Lola, Elisa's dog

The Ghost Haus, where we stayed

There were no ghosts roaming at night,

only James when he needed to go to the bathroom

The bottle tree,

where Kimball and Joe put their rootbeer bottle

(second one up on the left)

Round Top's courthouse

An old house we saw while touring Round Top

(which could be done on foot in about an hour or so)

The coffee house where we stopped for a cold drink and a game of checkers

The apothecary - this is really their pharmacy

An old fashioned bike we saw at Crazy Emma's Shop

A plaque we saw at Crazy Emma's that really signified what the trip was about

A fountain at the Music Institute in Round Top.

2007 Scan - February 2007

Summer of 2007

This has really been a fun summer!!!

Just before school got out, we got a puppy.

Her name is Cocoa.

A friend that James met in the playroom at Children's.

James and Hannah at the Ape House

at the Chicago Zoo.

The farm at the Chicago Zoo.

James making friend at the Shedd Aquarium.

The new gas grill that the kids got
Dave for Father's Day.

Fireworks on the 4th of July.

Cocoa and James.
They are both getting big.

James wathcing the planes at the Gary Air Show.

Lunch with Mrs. Teesdale in Chicago.

James brother, Jon, skydiving for his 18th birthday.

2006 Scans

These scans are from May of 2006,
after James had been on treatment for two years.
This shows approximately 25% shrinkage of his tumor.

2005 Scans

These scans are from 2005,
after James had been on treatment about nine months.

Starting Antineoplaston

We took James to Houston, Texas to begin treatment with antineoplastons in May of 2004. James had quite a rough time getting started - having trouble with nausea, vomiting, and control of his sodium and potassium. We were in Houston for a month, but it took about four months for him to level out on treatment. The photos at the bottom of this page are from our trip to Houston:

http://www.caringbridge.org/in/james/photo.htm

The staff at the clinic are so wonderful. They seem to really care. James made many friends with the people that worked at the clinic as well as other patients. One very special couple that we met was Robert and Marie Resendes. Robert was coming for treatment of a GBM. He has since passed away, but we try to keep in touch with Marie. James thinks of her often and prays for her.

2004 Scans

These scans are from April of 2004,

just before James started on antineoplastons.

Dr. Goldman

We are so thankful for Dr. Goldman, James' oncologist at Children's Memorial Hospital in Chicago. He has really done a wonderful job of caring for James over the last nine years.

In 2003, we decided to dress James as Dr. Goldman for Halloween, since he would be getting his chemo at the clinic on that day. It was realy quite a hit. Dr. Goldman dressed as the Grinch.

In 2004, James finished his second course of chemo with vinblastine, but the tumor was still growing. At this point, we realized that chemo was no longer going to have an effect on James' tumor and radiation was the only other option given. But, this was a hard decision. Radiation would certainly change our son. So, we prayed and we searched. We found a treatment by a doctor in Houston, Texas at the Burzynski Clinic called antineoplastons. It appeared that Dr. Burzynski had been having some success in treating brain tumors with antineoplastons. So, after much prayer, we decided this is what we would do for James.

Dr. Goldman did not necessarily agree with our decision, since the treatment is not yet FDA approved (although it is in clinical trial). But, he chose to support us in our decision. I quote, "I will not turn my back on James."

Dr. Goldman continues to follow James every month while he is on this treatment, helping us with any problems that might arise. We could not give James the best care possible without him.

Thank you, Dr. Goldman, for all you have done for James and our family.