Testing/Dr. Burstin/WTC

Today started with preoperative testing. As usual, nurses that don't usual draw from catheters don't like to accommodate them. They'd rather just stick the kid than find someone who can. We thought that would happen again today. But, God provided us with a very wonderful nurse, Vicki, who saw the anxiety on James' face and assured him that she would do whatever was needed to find someone to draw from his catheter. James must have thanked her a dozen times or so.



On the way to the next appointment, we found a park (if there can be a park in the middle of Manhattan) that had some tables to sit at. This was nice since we had packed our lunch and it sure beat the doorstep we used yesterday.



Then we met with Dr. Burstin, the pediatrician, who checked James over and cleared him for surgery.

When the appointments were finished, we headed to "Ground Zero." There isn't a lot to see - just a lot of construction.






But, we did tour St. Paul's Church across the street where many of the rescue
workers sought rest during those weeks after 9/11.






We also toured Trinity Church.








No....this is not a homeless person. It's just James - taking his daily nap at Trinity Church.

We went back to the Ronald McDonald House and, after a long nap, went to a barbeque hosted by the Yonkers Fire Department...complete with hamburgers, hot dogs, chicken, banana splits, and magic tricks by one of the firemen.



This is "Bear" and his family, from Richmond, Virginia. Bear is here for treatment of a neuroblastoma. They were such a joy to eat dinner with and we even learned that they are staying in the room next to us on the 11th floor. Bear says that if I want to come to his house, I just need to get on a plane and come to Richmond. What a sweetheart he is!!!


Bear and James

Dr. Kohn/Dr. Allen

First, I want to thank anyone that saw my message yesterday and prayed for James' line. This morning before going to his appointments, I did another dressing change and decided to try to flush it again...fully believing it wasn't going to make any difference, but why not give it a try? Well, it flushed with no problem. I could not believe it. I was really thankful for it when I found out that Dr. Wisoff's office didn't want to take care of it but felt we should have dealt with it before we came.



We met with Dr. Kohn today, the pediatric endocrinologist. She came to her clinic today just for James. She spent quite some time talking about the issues that might arise from the surgery and what we need to watch for. She was very thorough and I am confident that James will be in good hands after surgery. Aside from the surgeon, this will be the most important doctor. James' tumor sits in the hypothalamus and near the pituitary gland. These areas control many body functions like temperature, desire to eat, water control, etc. Bascially, Dr. Wisoff will go in and remove as much tumor as possible and totally mess this area up in the process. It will be Dr. Kohn's job to come behind him and try to fix everything he messed up. How well all these problems are controlled will determine how quickly James will get out of the hospital and what problems he will deal with long term.

When we finished with that appointment, we didn't have a lot of time before our appointment with Dr. Allen, so we just picked up a quick lunch at a deli and ate it on some steps nearby. Here is the deli and our "dining step."






Then we met with Dr. Allen, the pediatric oncologist. He was very kind. One interesting part of the meeting was when we all looked over James' MRI scans. We were looking at the November 2007 MRI (the one which first showed growth) and then the March 2008 MRI. He showed us an area that had actually shrank or even disappeared between the two MRIs. He asked again, "What were you doing during that time?" I told him antineoplastons. He said, "Whatever it was, it was doing something." Dr. Allen had us sign a consent to have James' tumor frozen. That will allow us to have it tested after the surgery and use targeted gene therapy to treat it in the future.

Tomorrow, James has preoperative testing and the meets with Dr. Burstin, the pediatrician who will clear him for surgery.

Today ended up being a very long day also. James acquired my bad headache that I had last night and this morning. Here he is waiting to see Dr. Allen and then insisted that we go home next.



So, we headed back home after the appointments, found some pizza to take with us, and will get to bed early. I don't think we are quite recovered from the trip here. Hopefully, we can find "Ground Zero" tomorrow, then maybe the Statue of Liberty of Friday.

Thanks again for all your prayers.

A VERY long day

Dave dropped us off at Midway Airport in Chicago this morning at 6:30 a.m. We were on the plane and ready for take off by 6:50 a.m. Is that amazing or what?

We had a layover in Atlanta - for which I am VERY thankful. We had the opportunity to have lunch with Dr. Mary Brittain. Thank you, Mary, for spending time with us!!!! We loved it!





While we were in the Atlanta airport, we saw many, many (hundreds) of servicemen and women that were coming from duty or going to duty. In fact, the first soldier we saw had a name on his uniform of "Kephart." That was amazing....for our friend's son, Jonathan Kephart, so bravely gave his life for his country in Iraq (http://www.iraqwarheroes.com/kephart.htm). By the end of our lunch, there were hundreds of them filling the atrium in the middle of the airport. James talked with some of them and a few even let us take a picture of them with James. But, the most moving part was when a group of soldiers heading out to duty were paraded through the atrium on the way to their plane while the entire crowd clapped and cheered. It brought tears to my eyes. It reminded me that when I get caught up with the cares in my life, there are still others - fighting a different battle than James' fights - that need my prayers just as much as I feel James needs your prayers.





We arrived in New York this afternoon. Getting from the airport to the Ronald McDonald House was an interesting trip - to say the least. The people at the RMH welcomed us here and have all been so kind. We are on the top floor - the 11th floor. Here are a couple interesting buildings that can be seen just outside our window.




We are going to bed early tonight - we are absolutely exhausted. Tomorrow, James has an appointment with Dr. Brenda Kohn - the pediatric endocrinologist - at 10 a.m. and then Dr. Jeffrey Allen - the pediatric oncologist - at 1 p.m.

Last night when I did a dressing change on James catheter, it would not flush. We decided to just leave it and let them take care of it here. PLEASE pray that this will get resolved before James' surgery. He can have the surgery without it with a peripheral IV, but using his central line would be much more comfortable for James.

Some have asked how to get a hold of us while were are here and how to send things. My cell phone number is 219-229-8107. We will be at the Ronald McDonald House until June 11th - 405 East 73rd Street, New York, NY 10021. Once James goes into surgery on the 10th, we will be at NYU Medical Center. When he is discharge (we are hoping around the 16th), we will be staying in the Philadelphia area until James needs to see Dr. Wisoff for follow up. There, we will be visiting with Pastor Vanhoose and his church. The address there is Grace Independent Baptist Church, 911 Durham Road, Penndel, PA 19047 (215-757-5294).

Thank you so much for your prayers.

Prayers for our Fundraiser

I am so blessed to have such wonderful ladies working with me at the hospital (not to mention a WONDERFUL boss). Kristin has agreed to run a fundraiser for James while we are gone to New York. We are hoping to raise the money to pay for further treatment once James is finished with surgery. This will allow us - prayerfully - to stay a step ahead of the tumor that remains. Please pray that the fundraiser goes well and God provides just what we need for James' treatment. If you are not involved in the event and would like to help, the address is on the sidebar to the left.

THANKS KRISTIN, BARB, LISA, AND OTHERS THAT ARE HELPING!!!

It's coming together

It's all coming together and we really do appreciate all your prayers.

The flight did not work out with Corporate Angel Network, but the Lord provided reasonably priced flights for us with AirTran. The good side to that is that we will take Josh with us - who will be a great help in taking care of the kids while there - and we get to fly through Atlanta with a 3.5 hour layover. Our good friend, Dr. Mary, will come to the airport and meet us for lunch. What a blessing!

Our room is confirmed at the Ronald McDonald House for the week leading up to surgery and they are considering giving us a second room for the night that everyone comes into town. If not, we'll just have to "pile in." James only has appointments on Wednesday and Thursday, so we are hoping that Iryna, a friend who lives near NY, will get to come in on Friday and help us go sightseeing. We really want to see the Statue of Liberty.

When James is discharged, we are heading to the Philadelphia area for a week - until he needs to be back in NY for a follow up appointment with Dr. Wisoff. Going to Philadelphia was cheaper than staying in New York and we have plans to visit with Dr. Swisher as well as James 1st grade teacher, Mrs. Ferguson, who moved out there.

Please continue to pray for the surgery.

Jon's Graduation

One day, James asked me if I wanted to see a picture of his "pride and joy". I wasn't sure what he was going to show me, but I thought he was copying a joke that Dr. Goldman had told us once (he had a picture in his wallet of a bottle of Pride furniture polish and Joy dish soap). But, when James opened his wallet, there was a picture of his oldest brother, Jon - James' pride and joy. Jon and James have been very close and James really looks up to him (literally - he's 6'1").

Last Thursday, Jon graduated from Fairhaven Baptist Academy.
We are so proud of him.



Graduating class of 2008

Jon with Mom and Dad

Jon with James and Johannah

Jon with Joe and Josh

Jon with Grandpa and Grandma

Aunt Lisa and the kids

Jon and Aunt Lisa

Jon and Jared were born only 3 weeks apart and have been close friends ever since. Above they are together at Jon's graudation, below at Jared's graduation last year.

Appointment with Dr. Wisoff

We went to South Bend, Indiana the night before and were treated like royalty by our friend, Martha Onkka. She put us up overnight so that we could be close to the airport for a 7:30 departure the next morning. We met Martha about 9 years ago when James was in the hospital and her daughter, Kate, was in also. Kate has spina bifida and has had many shunt surgeries. James and Kate hit it off right away and we have been friends ever since.

In the morning, we met Greg Cook and his business associate, Bruce, as well as Bruce's lovely wife. They all flew with us in their corporate jet to New York.







We landed at Teterboro Airport in New Jersey and there was a limo car waiting to take us to our appointment. During that ride, I decided that I would definitely not bring or rent a car when coming to NY next. I don't mind Chicago driving at all - it is pretty crazy - but NY driving was MUCH worse. Even the sidewalks seemed much busier than Chicago. But, we arrived at our appointment safe and sound.

Dr. Wisoff is an amazing man. I had been warned that he was not very "personable," but this is so far from the truth. I have never met a more polite and considerate doctor.



He took us in his office and showed us the scans. We talked about how much and which parts of the tumor he feels he can get out. He explained to James exactly what would happen and he answered all our questions.

We have always tried to be honest with James about what is going on and what will be happening, as least as much as we feel a 10 year old could understand. So, James had a very serious question for Dr. Wisoff. He asked, "What about coming out of the surgery?" James was concerned about dying. Dr. Wisoff explained to James that the chances of him dying in surgery were about 1%. Yet, the chances of getting run over by a car while crossing a street in NY was much higher. We certainly understood that comparison.

When we had finished and the surgery date was set (which is June 10th), Dr. Wisoff sent us to see his secretary who will make all the arrangements for us. It amazes me that such a busy man with such a busy office still takes the time to make sure that everything is taken care of for you. They will not only schedule all James' testing appointments that he will need before surgery, but will do everything they can to line up accommodations for us while in NY.

When we left, we still had an hour before the car would pick us up, so we went to lunch at a diner around the corner. While there, I asked James about his question and concern about dying. He said, "Mom, I not afraid of dying because of me - I'm going to heaven. I'm afraid of dying because of you - what are you going to do if I die?" I said, "I'll cry."

Just as scheduled, the limo car met us at the clinic and took us safely back to Teterboro Airport. There, Mr. Cook had the plane ready for us to load and take off. The weather was kind of rough coming into South Bend with high winds. I think that was really the only scary part, for me, of riding in a small corporate jet.

I cannot thank enough, Martha Onkka, Bonnie LeVar (Corporate Angel Network), Greg Cook, Bruce and his wife, and the drivers of the limo service for taking good care of us.

We will return to New York on June 3rd. James starts testing and appointments on the 4th and surgery is scheduled for June 10th. Johannah will go with us on the 3rd and, hopefully, Dave and the other boys will be able to come the day before surgery. This is certainly the hardest and riskiest thing we have asked James to do - and he is facing it with great courage. It is my prayer that all our family and anyone else able and willing will be able to spend time with James on the night before he goes in.

Thank you so much for all your prayers.

Answered prayer

Thank you all that have prayed for the details of our trip. I received a call today from Bonnie LeVar at Corporate Angel Network. She let us know that there is a businessman from Illinois that is willing to take the day off next Wednesday to fly us to NY, wait for us to have our appointment, and then fly us home the same day. WHAT AN ANSWER TO PRAYERS!! This solves several problems that we were having. We are sure to make it home in time of Jon's graduation as well as not needing a place to stay overnight. We will also be able to fly out of a local airport like Michigan City or Valparaiso instead of having to travel to Michigan, Chicago, or South Bend.

So, our appointment is next Wednesday, May 14th, at 11:30. We should come home with a surgery date. Please, please pray for wisdom in this surgery. It is a VERY risky surgery. Our hope and prayer is that James will make it through the surgery SAFELY (meaning we get back the same James that we send into surgery), that Dr. Wisoff will be able to get out more than he anticipates, and that the tumor will remain stable for longer than is expected.

We talked today with Dr. Goldman about options after surgery should the tumor come right back. To be honest, I don't like any of them. In case you didn't know, brain tumors don't have good options. Dr. Goldman really wants us to do radiation - but radiation will definitely come with a "price." We will certainly need wisdom and guidance from the Lord should we get to the point of making this decision.

Thanks for all your prayers. They mean A LOT.

Consultation with Dr. Wisoff

UPDATE 5/5 - I have not heard anything else back from Bonnie LeVar at Corporate Angel Network. Continue to pray that those plans will work out and a flight will be available. The Ronald McDonald House did not accept us because we are just coming for a consultation - not treatment. At least that might be a possibility when we go back for surgery. A couple other houses similar to that turned us down because they don't accept children. But, I got a message this afternoon from someone at Dr. Wisoff's office who mentioned that she was making plans for 3 to stay and needed me to confirm tomorrow. That sounded like she had a place in mind and maybe even lined up. We'll continue to pray that that works out also.

Although James continues on antineoplastons right now, we have let the Burzynski Clinic know that we are looking into surgery. The one thing we would like to have done is testing on James' tumor when it is taken out. Dr. Wisoff feels that we need to have a follow-up treatment lined up as the tumor may come back quickly. If they do genetic testing on James' tumor, targeted gene therapy might be an option for that. It is something we will be talking to Dr. Wisoff about when we meet with him next week.

UPDATE 5/5 - The appointment has been moved up to May 14th, but there are many details that have to be worked out before we can keep this appointment. The most important is making sure that we can get a flight back late on the 14th or early on the 15th in order to be back in time for Jon's graduation at 7:00 p.m. on the 15th. Bonnie LeVar from Corporate Angel Network is working very hard to make it happen, but hasn't found anything yet. I talked with someone at Dr. Wisoff's office and they are checking to see if we can stay at the Ronald McDonald House while we are there. So many loose ends make me very nervous, but I know that the Lord can make it happen - as He is the one in control when we feel that things are "out of control." I'll keep you updated on our plans.

UPDATE 5/5 - The soonest we can get an appointment with Dr. Wisoff is June 11th, but the secretary is going to send him a message and ask if he wants us sooner. I have begun the search for assistance with travel and lodging for that consultation as well as the actual time of surgery. Continue to pray that we will have wisdom.

~~~~~~~~

We finally heard back from the neurosurgeon in New York, Dr. Wisoff (here is an article about him that I was very impressed with - http://www.kidsofnyu.org/pdf/kidsbeat_5_2.pdf). He feels that he can get 60-80% of James' tumor out. But the catch is that he also feels that because James has a tumor that was diagnosed in infancy, it is more aggressive and there are overwhelming odds that it will return in weeks or months rather than years. We never believed that a resection of the tumor would be a cure, but we were hoping for a few years for James to be without any treatment.

With that in mind, it certainly makes us think carefully about whether this is what we should do. But, when I think of the alternative options - I just don't think there is anything else that's going to be effective. So, I will be calling Dr. Wisoff's office on Monday and scheduling a consultation for as soon as possible.

I don't know how we will pay for a trip to New York or a two week stay when the surgery is done, but I believe with all my heart that God does.

PLEASE pray that we will have wisdom to know just what God wants us to do for James.

March 2008 MRI

I just realized that although it's been almost a month since James' MRI and I have mentioned results other places, I have not updated here. I apologize.

When I looked at James' MRI myself, it looked identical to the one from January. Dr. Goldman basically said the same thing when we met with him. But, when I sent the disk to the doctors in Houston, they reported an 11% increase. That makes three MRIs in a row with increase.

Dr. Weaver recommended that we try increasing James' dose again. It can only go up a little more according to his weight, so I don't know what more difference it could make - but we are trying. He is now up ot 24/2.3 every 15 minutes.

Many people have reminded me that MRI measurements can vary drastically, which is true. It is possible that there really isn't an 11% increase. But, a couple things bother me. 1. Dr. Kahn has always been VERY careful in measuring James' tumor in the last four years, and 2. this is the biggest one, James' left eye has that "the lights are on but nobody's home" look, like it did at diagnosis. That says to me that no matter what the discrepancy in the MRI is, something is not going right inside his little head.

So, we have looked at all our options, which include:

1. Continuing on antineoplastons. This is not a terrible option, but, again, I'm not sure if it's going to help.

2. Radiation. Besides the fact that we have never liked the idea of using radiation for James because of the effects that can happen years later, I have heard that radiation is not very effective on tumors that have a lot of cystic components to them - which James' does. So, I'm not sure what good that would do either.

3. Gene therapy. This is not something we can ask Dr. Burzynski to do yet because James has not "officially" failed the antineoplaston trial. The tumor has to grow more than 50% in order to be considered failed. I don't think we want to wait until it has grown more than 50%.

4. More chemotherapy. But, if we go this route, I'm not sure what we'd use. Temodar is an option. But, I believe that all we could possibly accomplish with chemo (besides effecting his body and DNA) is stabilizing the tumor, and all the while it will be stealing his sight.

5. Lenolidamide. This is what Dr. Goldman suggested. But, again, I believe it would only stabilize the tumor.

6. Surgery. This is actually the option that we are looking at the closest. We have sent James' scans to Dr. Wisoff in New York. Dr. Wisoff is an amazing neurosurgeon who has experience in removing hypothalamic tumors. First, we have to find out if he'd be willing to do it. Then, we have to weigh the risks. This type of surgery would not be without consequences - we just have to decide if they are worth the benefit.

PLEASE PRAY THAT WE WILL HAVE WISDOM IN MAKING THIS DECISION AND THAT JAMES WILL NOT LOSE MORE SIGHT.

Praises!!

The biggest one....Johannah has gone a week without a grand mal seizure and about five days without ANY seizures. She made it to school EVERY DAY this week. I am very excited. We have tried to be faithful at making sure she does not have sugar or caffeine and at least a lower amount of carbohydrates than usual. She still needs to come down more on the carbohydrates, but "the ball is rolling!" I had checked out several books from the library on epilepsy and have been doing all the research I can. They have a lot of good recommendations. So far, we have added vitamin E and a vitamin B complex to her daily regimen. I still have yet to get a good multivitamin for her that doesn't contain sugar. I also started giving her 3 Frisium at night instead of 2. I don't know what is helping - I just know that she's doing better. PRAISE THE LORD!!

James had a drop in potassium this week - but nothing that a little extra Juice Plus didn't take care of.

Mary Jo Seigel, a former patient of Dr. Burzynski treated for non-Hodgkin's lymphoma, called us this last week to tell us that her son, Marc, is running in a triathlon in California in May and wants to use it to raise funds for James' treatment. Thank you Lord....and thank you Marc. Here is the triathlon: http://www.tricalifornia.com/index.cfm/Wildflower2008-main.htm My sister will be opening an account under their church to serve as a fund for James. This is such an answer to prayer!!! I have to make a flier for Marc to use, so I will post it when I'm done.

THANKS FOR ALL YOUR PRAYERS!!

Prayers Needed!!

First, Johannah is really not doing well. She has not bounced back very well from the seizure she had in Minnesota. This morning, she had another grand mal seizure and then continued to have seizure activity (that's the best way I know how to explain it - it's not a grand mal seizure, but she certainly is not "with us") until noon. It is now 8:00 p.m. and she is starting again. The doctor is going to consider increasing her Frisium. But, it appears that this medication - as the many others have - is losing its effect. I don't feel there is much hope with other medications. I am holding out for some success on the diet. PLEASE pray for her safety, that there will not be permanent damage from the seizures, and that the doctors can gain some sort of control.

Then, James has another MRI on Saturday. We are hopeful. Of course, he is doing well and has tolerated the increased dose of medicine wonderfully. He struggles with occasional high sodium (opposite of what he's dealt with in the past) and low potassium (from the increased fluids), but otherwise is doing wonderfully.

Finally, both Johannah and James are really struggling in school. In fact, it doesn't appear at this point that either one will pass this year. James has been working very hard, but he cannot pass unless he passes reading - which he is not. Many have reminded me that this is not the most important thing right now, and that is true. But, I do still feel bad for them. I know that it will be hard for them when the reality hits that they will not go on with their class. But, in the end, I'm sure they will do fine.

Thank you so much for your prayers.

You should see the other guy

Last weekend, I took the kids to Minnesota to go skiing (actually, James and Hannah were going to be tubing). I usually set the alarm to get up early and give Johannah her medicine - hoping to get it in her and working before she wakes or she will have a seizure. It worked on Sunday morning. But, Monday I went to the bathroom to get the water for her medicine and found her on the floor. I don't know when she got up or when she had the seizure. Unfortunately, it was a very small bathroom - so it would have been impossible to have a seizure without getting hurt - which she did. In fact, the bathroom looked like a crime scene when I found her. I took her picture. It doesn't look so bad - I had cleaned her up and you can't really tell that her nose is actually quite swollen and her upper lip is cut and swollen.



She has not had anymore seizures this week, but seems to be moving quite slowly - just not bouncing back so quickly. She could really use prayers as she tries to get back into school and get her make-up work done.

Here are some pictures of James tubing, the big boys skiing, and then James crashed on a couch in the lodge before the day was over.







We did all have a good time - even Johannah who enjoyed spending the day with Grandma and watching movies.

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

Measurements

Dr. Goldman's claim that the tumor has grown significantly has bothered me ever since. So, I decided to find all the numbers myself and get to the bottom of this.

I dug up all the MRI reports from Chicago that I could find. Here they are:
(mass is determined by multiplying the three dimensions - subtract the difference from baseline and divide by baseline to determine the % of change)

04/28/04 - 3.4 X 4.5 X 4.2 cm (mass of 64.2)- baseline
01/19/05 - 3.5 X 3.9 X 3.3 cm (mass of 45.1)- 30% decrease
04/20/05 - 3.2 X 3.8 X 3.8 cm (mass of 46.2)- 28% decrease
06/28/05 - 3.4 X 3.8 X 3.8 cm (mass of 49.1)- 24% decrease
11/01/05 - 4.2 X 4.0 X 3.3 cm (mass of 55.4)- 14% decrease
02/20/06 - 3.7 X 4.4 X 1.7 cm (mass of 27.7)- 57% decrease
05/13/06 - 3.4 X 4.3 X 2.5 cm (mass of 36.6)- 43% decrease
08/20/07 - 4.0 X 3.0 X 4.6 cm (mass of 55.2)- 14% decrease
11/17/07 - 4.3 X 3.0 X 5.0 cm (mass of 64.5)- back to baseline
01/11/08 - 4.4 X 3.1 X 5.1 cm (mass of 69.56) - 8% increase

This is my take on it. This shows fluctuation. I don't think the tumor fluctuates like this, I think it is a difference in measurements - probably a different person measuring. It actually makes me understand why they declare "stable" with any change under 25%. If you declared change every time a measurement varied from another, you might drive yourself crazy (if you have not already arrived there). But, I still don't like that practice - that is what allowed James' tumor to return while off treatment for 2 years and all we were ever told was "stable."

I do believe, though, that this implies that for 2 1/2 years the tumor shrank and then for the last year we have slowly lost ground. It probably means we should have considered increasing his dosage a year ago, not two months ago.

I mentioned my problem to Dr. Barbara at the clinic and she spent the entire day tracking down numbers, had Dr. Kahn remeasure the tumor two times, and met with Dr. Burzynski to review them again.

Dr. Barbara called me back to let me know the comparison they have between the two facilities. They have taken the sq. cm. from the Chicago MRIs, making it possible to compare their results with Chicago. Here is what she said, comparing the baseline MRI with the most recent MRI:

In April of 2004, Chicago measured a tumor that was 15.54 sq cm compared to Houston's 15.99 sq cm. Although it is slightly different, it would be considered the same.

In January of 2008, Chicago measured a tumor that was 15.81 sq cm compared to Houston's 13.77 sq cm. Now, this is a significant difference in opinion.

Dr. Barbara questioned Dr. Kahn about the difference in this last measurement. He noted that there is a cyst attached to the tumor. If you were to measure the tumor WITH the cyst, you will get 3.1 cm in that direction - WITHOUT the cyst, you will get 2.7 cm. This would make the actual tumor size 14% smaller, but if you wanted to factor in the cyst it would be 1% bigger - or a stabe tumor.

Okay, so the bottom line......we have a tumor that is anywhere from 1-8% increased (which even in standard treatment would be considered nothing - stable) or 14% decreased. Let's take the mean of it - 7% decrease (which, again, basically means no change).

It is clear that we obviously had a reduction in the tumor around February - May of 2006. I do wish we still had that and didn't lose ground. But, unless the tumor either continued to slowly grow or showed that it simply isn't going to respond to treatment anymore, I don't think we are at a place yet to need to change treatments - the biggest reason being that most other options are only successful in stabilizing a tumor. It seems that we have at least accomplished that with antineoplatons.

Maybe you are saying that this seems like a lot of hullaballu for nothing. But, I had to settle this in my own mind. If someone wanted to claim that they didn't like antineoplastons because it has kept James' tumor the same size, I wouldn't argue with them (although I wouldn't agree). But, to say that his tumor is anywhere from 60-100% increased since starting this treatment simply is not true.

Now......that settled......we will pray for some good results on the next MRI, which I will be calling this week to schedule for the beginning of March. We certainly appreciate everyone's prayers.

Getting help with their medications

We have learned of the Cancer Coalition of America in Houston and are in the process of applying for a grant that will help with the cost of James' treatment. We'd appreciate your prayers for this and will let you know what we find out. If this goes through, anyone wanting to help is able to make a donation to the Cancer Coalition of America and earmark it for James.

I had sent an appeal to the pharmacueutical company in the U.S. (Ovation Pharma) that as the rights to Frisium, in hopes that they might be able to offer some assistance with Johannah's medicine - especially since the price has doubled this year. I heard back today and they say there is nothing they can do. I have emailed the epilepsy foundation and will contact the neurologist in Chicago to see if they know of anything.

Then, we will pray - I know that God will supply.

Not good...but not bad

The most recent MRI report states that there is a 1 mm increase in the tumor. Even Dr. Goldman says that it looks the same and that 1 mm could simply be a discrepancy in measuring. We do know, though, that there is no significant growth. Dr. Goldman thinks it's time to change treatment. He knows that we have tried to avoid radiation, if possible, and he is offering an antiangiogenesis type chemotherapy, lenolidamide. I asked what results he has seen with it. Although it was only through (or maybe still in) phase I (which only determines appropriate dose), he said that out of 39 children in the trial, 8 showed either shrinkage or stabilization of the tumor. Just to note, it is most often the goal of a chemo regimen to simply keep the tumor stable. So, when this happens - it is considered a great success. Although I would certainly rather have James' tumor remain stable than grow, I just don't feel that the overall goal should be to simply stabilize the tumor.

Without a whole lot of research, consideration, and prayer yet - I believe that our first action, IF the antineoplastons is considered to be not working any longer, would be to talk with Dr. Burzynski and see if he had any options with targeted gene therapy. This is what he is using right now for Pastor Smith's son, Andrew (www.caringbridge.org/visit/aws). This is also what Dr. Burzynski was talking to me about when we visited Houston last. He is very excited about this new treatment. He would love to add it to the antineoplaston therapy - he says it would accelerate the treatment. But, most patients on antineoplastons are locked into clinical trials and are not allowed to add any other treatments. IF that were not an option, I would at least consult with Dr. Wisoff in New York. He is the one and only (for the most part) neurosurgeon in the nation that will consider removing optic gliomas (which are considered inoperable) - and, by what I have seen, has done a good job. That decision would certainly take much prayer and consideration, for it wouldn't be without its problems. But, at least it would be accomplishing much more than just stabilizing the tumor and allowing it to steal the rest of James' vision.

For now, no decisions will be made. James is healthy and well and it seems as if the growth has stopped. So, barring any change that Dr. Burzynski might have, we will continue on and see what the next MRI shows. They have continued to increase James' dose and he is tolerating it well. He is now on 17.5 cc of A10 and 1.9 cc of AS2-1 96 times a day (every 15 minutes). This is the highest dose that he has ever been on, so we are quite happy that he is doing so well on it.

In the meantime, I'd like to look more into any supplements or diet changes that might help in James' treatment - especially since a diet change is what Johannah needs most. Of course, it certainly couldn't hurt the rest of us, either.

We do so appreciate all your prayers.

One more day

Tomorrow's the day and I will admit that I am anxious about it. I am praying that the next post will be good news. James has tolerated the increased dose very well and I hope it has made a difference. We will then meet with Dr. Goldman on Monday. Because of the holidays and schedules, we have not met with him in several months.

Johannah woke this morning with a bad headache and neck pain. I kept her home and hoped to get her in half day, but she didn't seem to feel better. I do think she does have pain, but when pressed about the whole thing I sensed that something else was wrong. So I pressed and I learned that the girls have started swimming in sports and she cannot swim unless supervised one-on-one, so she's been having to run and work out while the girls swim. Understand that Johannah doesn't cry much, and this brought tears to her eyes. So, I will try to go in during swim time to watch her participate. I confess...I am feeling like a Jonah today. It is really hard to see her hurting. With the school that she misses and the struggles that she has with seizures and clear thinking, she does get left out of a lot of things. It has been quite a lesson for both of us to learn to move forward WITH the life that God has given you and not become stagnant because of it.

Thanks for your prayers.

Quick Update

With just a few more days until James' next MRI, I wanted to ask for the prayers of any that are checking the site. The Burzynski Clinic was late on getting James' last MRI disk and just recently let me know that they consider the tumor about 10% bigger. They have increased his dose of A10. He is actually now on a higher dose than he ever has been. It is our hope and prayer that this will have arrested anything that was happening. The MRI should let us know. He is doing well, but I do worry with school starting again. We have talked to James about really doing his best this semester and we hope that the increase in dose doesn't throw everything off. He needs a good semester and we know he can do it if he really tries.

Johannah is doing pretty well. She did have another grand mal seizure on Thursday, but I think that was the only one for the entire Christmas break. Although she did have mornings where we saw seizure activity, we were able to get it stopped before she had a big one. She, also, is going to be trying for a better semester than the first one.

We cannot tell how much we appreciate all the prayers. But, I wanted to specifically ask for prayer for:

1. Shrinkage, or at least stability, on James' next MRI.
2. Help with staying awake and concentration for James in school.
3. Fewer seizures for Johannah.
4. A clear mind and help remembering for Johannah in school.

Please take the time to leave us a comment. It is so encouraging to know who is praying for James and Hannah.

What is Christmas about?

I liked this video. Linus says it well.....



I needed this reminder of what Christmas is really about. It seems that we've really been in a slump and can't get into the "Christmas spirit." James is doing well on treatment and will have his next MRI on January 11th. But, he is struggling in school and that keeps us quite busy. Hannah struggles everywhere. She had two grand mal seizures last week and missed a lot of school. Then, she hurt her foot and missed another day because it was so swollen. With everything happening, it was easy for me to allow it all to steal my joy rather than remembering where my joy really comes from - the Lord and His salvation. So, thank you, Linus, for reminding us what Christmas is REALLY about.

MERRY CHRISTMAS!!!