2007 Scan - November 17

Well, for the first time in three years, I don't like the look of this MRI. Overall, the tumor is still smaller than when we first started. There are even areas where you can tell that cystic portions of the tumor which were there previously are now gone - absorbed by the body. But, compared to a scan about 6 months ago, the tumor looks like its a little bit more active and maybe even a little bit bigger. We have determined to make sure that James is faithfully on his medicine and scan again in two months instead of three months. As before, I will need to find someone to help me get the scan posted on here - but I will do it as soon as possible. I'll tell you why. Recently, God has shown himself faithful (as usual) in providing for James' treatment. I just cannot believe that God would have provided for James to continue receiving this medicine if it wasn't going to work. So, I am just as anxious to post these results as I would be if they were good - because in the end we will see that God will take care of James. We covet your prayers.

Neither did the cruse of oil fail!

I started this blog because we thought that we would have to start fundraising for James' treatment. As mentioned, our insurance at the hospital had stopped paying for the treatment. Every year they make more and more cuts to the benefits and this year was "James." It really didn't make a big difference since he was quickly approaching his lifetime max of benefits with that insurance. So, we thought we'd have to begin fundraising to keep James on treatment. His old website (www.caringbridge.org/in/james) is not accessible from the internet and we wanted a site that people could find simply by using "google."

But, we never started fundraising. It seemed that the more thought we put into the idea, the more we did not have a peace about what direction to go. Do we start a 501C3? Do we just open a bank account? Make it a foundation (even had a name - the Cruse of Oil Foundation)? We knew that God would supply, we just didn't know how.

Let me back up a bit. Three years ago, when James was to begin this treatment, we needed $20,000.00 just for the first month. After that, the cost would be anywhere between $7,500.00 and $10,000.00 a month. That's a lot of money!!!! Money that we did not have. So, believing that it was the direction God wanted us to go, we asked Him to provide. Yet, we set in motion the plans to start fundraising. We wrote a letter that we planned to send to anyone and everyone that we knew. But, before the letter was sent, God provided. Our insurance had approved the treatment.......get ready.......100%. That was unheard of. God was clearly telling us, "I don't need you to take care of this, I have already done it."

So, when James coverage was coming to an end, we knew that God would provide....but, again, we did not know how. And, once again, (oh, we of little faith) we began to make plans to do fundraising. And, ONCE AGAIN, before we could begin, God provided. The bills that have come to us from the clinic for the last three months have been taken care of.....all but $500.00 - and the amount that we owed from the past is GREATLY reduced. We don't know how or why.....except that God has provided AGAIN. "Neither did the cruse of oil fail...." We have thought of opening an account for James to cover this monthly charge as well as the back amount that is still left (and the many doctors that we owe in Chicago). If any have suggestions on the best way to do this, please let us know.

Tomorrow James goes for his next MRI (I know, I know - I haven't even posted the scans from the last one). I will let you know, as soon as we do, what it shows.

Thank you for your many prayers.

James' sister

James sister, Johannah, has epilepsy. The doctors have struggled for a few years now to get her seizures under control. It seems they have success for a short time with each medication, then they lose it. I mention all this now because this past week has been especially difficult for her - ending with a grand mal seizure in the bathroom this evening. It is our hope to get her started on the modified Atkins diet - much like the ketogenic diet. Many have been able to achieve seizure control with these diets. Please pray for her safety and for wisdom as we attempt to get her on this diet.


Update 11/16 - We have begun to change Johannah's diet. She's not really happy about it, but we are working on finding "fun" things to include that make it not so drab. I have also added fish oil twice a day and flaxseed oil twice a day - since the diet seems to emphasize increasing the "fats." This last week has gone MUCH better. I can't say whether its the diet, the supplements, or just the many prayers - but she looks and feels much better. She had some seizure activity on Thursday, most likely due to the long activity on Wednesday night with the teens' food drive. But, otherwise, she has done much better. School went much better also. We're not sure if she will pass the 7th grade in the end, but it is our prayer that as her seizure ease up and we can possibly decrease the medication, she will be able to pull her grades up - or, at the least, have a much better year next year. We do really appreciate your prayers.

Update 11/23 - Once again, Johannah has had a better week. She worked hard this week to improve her grades - as they have really suffered lately. She did still get some bad grades on a few assignments, but came through with some remarkably good grades on others. She has to work hard for those good grades, but she's getting there. We continue to try to keep her on the modified diet and continue to give her the flaxseed and fish oil. I think its all helping. We're just moving forward, thanking the Lord for the good days and asking for His help on the rough ones.

Update 12/04 - Johannah has had a rough time since Thanksgiving. We were not faithful to the diet during the holiday and have had trouble getting her back on it. I was faithful, though, at making sure she continued her flaxseed and fish oil. But, she has already had two grand mal seizures this week - which confirms that the diet really does help. So, we know what to do, we just need the means to accomplish it. We covet your prayers.

Update 01/05 - With the holidays over and school beginning to start, we are determined to get Johannah back on the diet. It really seemed to work well when she was on it. She remains on the fish oil and flaxseed oil tablets and I have added melatonin at night. One of the things that helps epilepsy patients is making sure they get good sleep and the melatonin should help. Please pray that the Lord will be with her during this next semester.

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.