Tuesday, August 21, 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.
after James had been on treatment for two years.
This shows approximately 25% shrinkage of his tumor.
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.
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.
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.
Diagnosis
James was diagnosed in December of 1998 with an optic glioma brain tumor.
Soon after diagnosis, James stopped eating altogether (and I mean ALL). By the time he was 1 1/2 years old, he had dropped to a mere 11 pounds.
http://www.caringbridge.org/in/james/photo.htm
James was started on chemotherapy with carboplatin and vincristine. Once the tumor began to shrink, he started eating again. Being sodium deficient, as most optic glioma patients are, he craved at first only salty things like chips and sausages. To this day, he absolutely loves salty things. After two years of this treatment, the tumor shrank approximately 80%. He was off treatment for two years, during which time the tumor grew back entirely. He then had chemo again with vinblastine. This slowed the tumor growth, but did not stop it.
Soon after diagnosis, James stopped eating altogether (and I mean ALL). By the time he was 1 1/2 years old, he had dropped to a mere 11 pounds.
http://www.caringbridge.org/in/james/photo.htm
James was started on chemotherapy with carboplatin and vincristine. Once the tumor began to shrink, he started eating again. Being sodium deficient, as most optic glioma patients are, he craved at first only salty things like chips and sausages. To this day, he absolutely loves salty things. After two years of this treatment, the tumor shrank approximately 80%. He was off treatment for two years, during which time the tumor grew back entirely. He then had chemo again with vinblastine. This slowed the tumor growth, but did not stop it.
Monday, August 20, 2007
Thank you, Lord
I want to start by saying Thank You to the Lord for all He has done for James and our family. After nine years of treating James' tumor, we have a wonderful little boy. In looking around in the "brain tumor world," it doesn't take long to realize that most brain tumor patients are not here nine years after diagnosis, let alone with the health that James has. Although he has significant vision cuts caused by his tumor, most optic glioma patients after nine years are blind. James struggles to read, but can still read nonetheless. Many optic glioma patients have problems with hormones and growth because the tumor is so close to the pituitary gland. James does not have any of this. At 11 months old, James stopped eating altogether (and I mean all). This was caused by the tumor. He dropped to only 11 pounds at 1 1/2 years old. Yet, today, James weighed in at 79 pounds and I have a hard time keeping him in clothes. Growing is certainly not a problem for him - and neither is eating.
As mentioned, we have been blessed with insurance coverage for James up until this time. This doesn't leave us with no bills, but it certainly could have been worse. Most of all, we wouldn't have been able to get him started on the treatment without the coverage. But, as also mentioned, James coverage is running out - having reached his lifetime max of a million dollars (after already having used about $400,000.00 at a previous job).
As you can see, God has been so good to us - thus our theme. I know that He will continue to care for James and provide. It is our prayer to keep James on the IV antineoplastons as long as possible - as this offers the best effect on the tumor. When he has reached the maximum benefit from the IV treatment, he will be switched to the pill form - used more as a maintenance treatment for a few more years. Then, prayerfully, the day will come that James will no longer need anymore treatment. He will be tumor-free and will go on to serve the Lord with his life. A life that God gave once, at birth - twice, at salvation - and a third time, when He cured his tumor.
Thank you, Lord, for all you have done!!!!!
As mentioned, we have been blessed with insurance coverage for James up until this time. This doesn't leave us with no bills, but it certainly could have been worse. Most of all, we wouldn't have been able to get him started on the treatment without the coverage. But, as also mentioned, James coverage is running out - having reached his lifetime max of a million dollars (after already having used about $400,000.00 at a previous job).
As you can see, God has been so good to us - thus our theme. I know that He will continue to care for James and provide. It is our prayer to keep James on the IV antineoplastons as long as possible - as this offers the best effect on the tumor. When he has reached the maximum benefit from the IV treatment, he will be switched to the pill form - used more as a maintenance treatment for a few more years. Then, prayerfully, the day will come that James will no longer need anymore treatment. He will be tumor-free and will go on to serve the Lord with his life. A life that God gave once, at birth - twice, at salvation - and a third time, when He cured his tumor.
Thank you, Lord, for all you have done!!!!!
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