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.

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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.