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.

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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.