History

Saturday, November 24, 2007 1:23 PM CST

What a wonderful Thanksgiving we had. Dr. Brittain, in Atlanta, gave us a wonderful Thanksgiving meal. Then, after a nap, we got together with some friends and had a great time playing games until midnight (except Dave, Johannah, and James - who had to go home early since Dave worked the next morning and Johannah can't stay up late).

We really do appreciate the prayers for Johannah. We have done as much as possible in getting her on the new diet. We have yet to meet with the nutritionist and find out the exact plan. We have also added fish oil and flaxseed oil to her medication. She is doing MUCH better. Her eyes are brighter and her thinking is clearer. What a change!!!

James MRI on the 17th wasn't as good as I would have liked. I think we have become too comfortable and, therefore, lax. The tumor is still smaller than when we began treatment, but maybe a little bit more active and a little bit bigger than about 6 months ago. So, we have determined to make sure James is faithfully on treatment and we will scan again in two months instead of three.

We do covet your prayers for James and Johannah. God has been so good to us - and we know that He will continue.

Saturday, November 3, 2007 8:07 PM CDT

This weekend has been especially difficult for Johannah. Actually, this whole past week has not been good. She has had more seizure activity than I have seen in quite a while, maybe ever. Dave and I are more determined and have begun to get her started on the modified Atkins diet. It seems, by what I have read and heard, that children have some pretty good success getting the seizures under control with this diet. Many are even able to get off the medication. We pray that this is what we will be able to do for Johannah. Besides the confusion that the seizures cause, the medication she is on makes her quite dizzy. This week, I believe I officially have a "zombie." I will admit that it is making me quite sad for her. Please pray for her.

Leiann

Thursday, October 18, 2007 1:53 PM CDT

I know it has been forever since I have updated here - I apologize. It seems that things were just a whirlwind with the kids starting school and then planning a trip to Houston. I posted some info and pictures about our trip on James' blog. Please check it out -

www.jamesneubauer.blogspot.com

James is doing so well. Johannah still struggles and school is really hard this year - being 7th grade combined with seizures. Please pray that things will settle down for her and that God will work in her body and in her life this year. We are going to try to get her started on the modified Atkins diet, which is used for seizure patients. First, I have to get it together and make a food log for the dietician.

Thanks so much for your prayer and support.

Leiann

Saturday, August 25, 2007 11:11 PM CDT

Jon Skydiving

Jonathan skydiving for his 18th birthday!

Tuesday, August 21, 2007 4:49 PM CDT

James is doing very well. He still has one more week of IV antibiotics, but so far all the cultures are negative. The real test will be if the cultures remain negative when the antibiotics are done.

He just had his MRI on the 20th. I took a look at it before sending the disk to Houston and I think it looks like we are still heading in the right direction with slight reduction. Maybe it is just my hopeful thinking. We'll see what the radiologist in Houston says.

James is gearing up for 4th grade, Hannah for 7th. I am really praying for a good year.

Hannah is still doing better than last school year, in terms of seizures, but not quite as well as the middle of the summer. Yesterday she woke with a bloody lip and wet - all signs that she had a seizure in the night. She felt sick most of the day and then started having more seizure activity in the afternoon. I fear that we are losing the effects of the Frisium.

I have started a blog for James - not because I think he needs yet another website, but to use for updates on fundraising efforts. With James insurance running out, we are working at getting a medical fund set up for him - to help with his treatments costs. This blog is mostly history information now, but will be fund updates once it gets going. It is at www.jamesneubauer.blogspot.com

We really appreciate all your prayers for James and Hannah.

Thursday, August 16, 2007 3:34 PM CDT

After deciding that James' line WAS infected, then it WASN'T infected, and then back to it WAS infected - James is now on IV vancomycin at home. That part we are thankful for. Please continue to pray with us that the line will be cleared.

On another note, James' insurance is running out. We were one of the few Burzynski patients fortunate enough to have insurance pay for this treatment. But, for this reason, James will soon reach his lifetime maximum coverage of a million dollars for this insurance coverage. Dave is looking at other job options - of course, it would be questionable whether that insurance would choose to cover this treatment. We are also going to finally get a medical fund account opened for James, in hopes of raising some funds to help with his treatment. If you would be interested in helping with James' treatment, I should be getting the information posted here soon. Pray with us that we would have wisdom to know what God would have us to do. I have no doubt that He will provide - as he has all along - I just don't know how.

Friday, August 10, 2007 6:46 AM CDT

JAMES WOKE THIS MORNING WITH A TEMP OF 102. PLEASE PRAY THAT HE DOESN'T HAVE AN INFECTION.

Friday, June 1, 2007 2:49 PM CDT

It's been a while since I updated. The kids finished school and did well. Both Johannah and James passed their grades, which was a worry to us since they've both had struggles this year. James has much work to do over the summer to be ready for fourth grade, but we will do what we can. He had his MRI in the middle of May, but being a late one, I didn't get the disk and haven't heard the results yet. I hope I'm not being overly confident that all is well, but he's doing so well that I can't imagine it's anything else. I'll get the disk soon and let you know what they say. I will meet with Dr. Goldman on the 13th and we are going to make a decision on using a vancomycin flush in James' central line everyday when we change the bags. There is not much documentation on the efficacy of the vanco flush, but there are doctors (Goldman included) that really believe in it. There is a doctor at the University of Wisconsin that uses is prophylactically, like we want to. I have written him to get his input and then will discuss it with Goldman on the 13th.

Johannah seems to be doing a little better. The new medication, Frisium (clobazam), seems to be kicking in. She's had a few seizures, but not nearly as severe. She even had a grand mal seizure a few weeks ago that lasted a VERY short time and then she was conscious right away. That was different. I will be meeting with the neurologist on the 13th and I'm going to see if he will get her off the Neurontin and then, when stable on that, bring the Lamictal down a little. Hopefully, those changes will give her a little more stability in how she feels. She's going into the seventh grade, which is making me more nervous than her.

Thank you for your continued prayer.

Friday, April 27, 2007 10:50 AM CDT

I wanted to ask for special prayer for Johannah. She is really having a rough time. Seems that over the last week we have had to "head off" seizure activity quite a bit. Last night, after being fine all day (except her usual not feeling good), she had a grand mal seizure at 6 p.m. before I even had a chance to try to stop it with the Klonopin. It just seems that things are not getting better for her and she feels terrible. Please pray for wisdom to get the seizures under control and for safety for her.

James is doing fine and we are thankful for all your prayes for him.

Saturday, April 14, 2007 10:49 PM CDT

THANKS FOR THE PRAYERS!!

James'white cell count is back in the normal range. He looks a little pale to me (I could just be paranoid), but overall he is doing well. Please continue to pray that his central line will remain free of infection.

Thanks also for your prayers for Johannah. She still struggles. She had a bit of seizure activity on Thursday and again today, Saturday. We were able to get it stopped with some Klonopin. Pray with us that the right combination of medications can be found and the seizures would stop for a longer period of time. I am told that the longer you can get the brain to NOT seize, the better chance there is that it will stop seizing ~~ yet, the more often that it seizes, the more it WILL seize. We definitely covet your prayers.

Friday, April 6, 2007 9:53 AM CDT

PLEASE PRAY!!

Last Monday, James' blood tests showed a slight drop in his white cell count and neutrophil count. This is usually a sign that he has an infection. He looks and acts well (which he usually does when he has a raging infection) and the site of his central line looks fine. So, we are trying everything we can to head this off with oregano oil (natural antibiotic - since doctor's won't prescribe antibiotics until the problem is bad enough to be sure), immune boosters to help his body fight this, and increase in his iron supplement (since he is quite iron deficient). Dr. Barbara seems to think that it is caused by the iron deficiency. I am not convinced. He has always been iron deficient and history shows that his white count drops when he has an infection. So, please, please pray with us that God will take care of this line - as He can do more than I could ever think of.

Hannah still struggles. She's only had two seizures since starting the clobozam, but just doesn't feel well. It could be just an adjustment to the new medication - I hope so.

Saturday, February 17, 2007 0:37 AM CST

I guess it is time to get rid of the birthday pictures and go on, but I can't bring myself to get rid of the one of Robert and Marie - so I'm leaving it up. This couple was so good to us at a time when we needed a friend. James is still doing very well. He even seems to be handling his dose better (which I didn't think would happen after being on it for over 2 years). He only wakes one time a night to change. Overall, I couldn't ask for any better. We continue to pray daily that God will keep his line infection-free. It actually has a pinhole crack in it that is sealed with superglue right now. Please make this a matter of prayer with us that he will be able to keep this line for a long period of time - as there is a very good chance it is the last line he will be able to get.

Johannah is doing okay. She went two and a half weeks on the clobazam before having another seizure. That one actually followed a 12 hour drive to North Carolina to see my sister - so that certainly could have contributed to it. She didn't do really well the day after driving back - but no grand mal seizure. I know I am trying to be optimistic, but it seems that the clobazam is working. Please continue to pray for her safety and that the seizures will get under control. We are told that if we can get to the place that the brain stops seizing for 2-4 years, then it usually "forgets how to seize." We are still working on getting to that place where it stops seizing.

Thanks for all your prayers - they really do mean a lot.

Friday, February 16, 2007 1:11 AM CST

I'm sorry for not updating. I was holding off hoping to have James' birthday pictures ready - but needless to say I didn't get it done. I will have them soon.

James is doing well - but never a dull moment. His MRI was put off the first time because he had strep. They said they would do it the next Saturday. Dave took him, only to find out they meant two Saturdays. So, it is this Saturday. We are praying for wonderful results. He is really doing well on the treatment and getting back to his normal dose after the severe rash. The other day when flushing his central line, I noticed that it has a crack. I got a little panicked knowing the trouble it will be to replace this line. The hole is VERY tiny - but nonetheless could let in bacteria. I "super glued" it and called the clinic the next day - who informed me that that is exactly what they would have done. When we go for our appointment with Goldman, they will check on it and make sure it doesn't need further repair. But for now, it isn't leaking and we are using it. Our biggest request would be prayer that this doesn't become a source of yet another infection.

Johannah almost made it two weeks without a seizure. She seized again last Friday, also with the seizures continuing every time she woke - thus requiring us to give her the Diastat. I guess I feel like things are still only getting worse. The seizures are not spacing out any further apart and they are becoming more intense and prolonged. I am awaiting a call from the neurologist to see what we need to do. Please pray for her safety.

Sunday, January 28, 2007 1:27 AM CST

I guess I should have figured out by now that everytime I say someone is doing well, something happens. Before I left for work yesterday around noon, Johannah wasn't looking well. I didn't really see seizure activity, she just wasn't feeling well and didn't look so good. She usually only seizes in the mornings and it was almost noon, but I had her lay on the couch, just in case, and told the boys to keep a close eye on her. By the time I got to work an hour later, I called home and she had had another grand mal seizure. They said it was pretty bad. Dave gave her a half a Klonopin when she woke. She seemed to do better the rest of the day, just very tired (Klonopin does that to her). I thank the Lord that He let me see that coming and she was in a safe place. I can tell that our friends are praying for us and for Johannah's safety. THANK YOU!

Thursday, January 25, 2007 9:46 AM CST

I wasn't going to update until after James' birthday, but I thought I'd add a quick one today. James was home yesterday due to a bad rash from the antineoplastons. He occasionally gets this rash when the dose is increased or restarted, but it goes away as he adjusts. This time, the rash got to the point of being like large welts that are hard and painful, actually making it difficult for him to sit down. He will be off his treatment for a few days to let this clear up.

In 2004 when James was in Houston beginning treatment, we met a wonderful couple, Robert and Marie. Robert had come to Houston to begin treatment for a GBM (very aggressive brain tumor). As James usually does, he made fast friends with this couple and they fell in love with him. Robert passed away about 6 months later, but Marie has sent James a Christmas card and money every year - which we usually use for his birthday. So this year, Marie has paid for James to have a birthday party at McDonald's. He is REALLY excited. He has invited a few of his friends and they will be going sledding after school on Monday and then to McDonald's for the party (and more playing). I told James yesterday, "I hope these bumps get better before your party on Monday." He said, "Oh, I'm going anyways."

Johannah is doing well - just struggling in school. Thanks for your many prayers. They are greatly appreciated.

Friday, January 12, 2007 10:55 AM CST

As always happens when you really want answers, Johannah's EEG didn't really show anything. Even though we took her off the Neurontin when she was admitted, she didn't have any seizure activity, except a very little bit on the morning she was discharged. She resumed her Neurontin when discharged and did well until the next Tuesday. That day, she woke with her eyes fluttering quite a bit. We had her lay on the couch until it would stop. This went on for the next 2 hours until she finally had a grand mal seizure at 11:30. After a time of being postictal, she had another grand mal seizure. I called the neurology office and the nurse suggested they call in some Klonopin - since she could probably take it once she woke again. Before we could go pick up the Klonopin, she woke and headed into the third grand mal seizure - so I used the Diastat. This actually worked very well. It stopped all the seizure activity in about 15 minutes. She did not have anymore headache and she was actually quite coherent. I did give her a dose of the Klonopin the next morning, but it really made her dizzy with blurred and double vision, so I did not give the night dose. We saw the doctor again on the 8th and the plan is to increase the Neurontin to twice a day (in addition to her Lamictal twice a day) and used only a half or quarter of a Klonopin if there is seizure activity - in hopes to stop it, relieve the headache, and get her into school. I did use a half dose this last Tuesday (9th) when she woke with the eye fluttering activity, but it was still too much for her to be able to function in school. I think the next time, I will try a quarter of a dose.

James is doing very well. I am anxious for the next MRI on February 3rd. His hemoglobin is a bit low (9) and Dr. Barbara ran an iron study to determine what might be the cause. The study showed that he definitely has low iron, but I don't know what that means and what the plan will be. I am hoping to hear from her today. I am going to add the whey protein drink in the morning and we are giving him a multivitamin. Brain tumor patients are actually not supposed to have the B vitamins, but with James having such a severe protein deficiency, I think this is one of those things where the benefit outweighs the risk.

James will be 9 years old on the 29th. He is really excited. I am going to try to get pictures done for his birthday, so I will get it posted. Thank you so much for all your prayers - they mean a lot.

Tuesday, December 26, 2006 1:45 PM CST

I got Johannah settled into the epilepsy unit for her 4-day EEG and then I stopped over at 3-West where James spent so much of the first three years after diagnosis. It dawned on all of us as we talked that James was admitted for the first time exactly 8 years ago today. At that time, I brought in a VERY sick little boy. I remember that first day when the doctors came around and all James could do was lay there or throw up. Soon after that, he stopped eating altogether. I can't say, "I never would have imagined that we would be where we are today." At that time, I didn't imagine anything past the day or the moment - he was that sick. I didn't think of him as 2 years old or 3 years old or going to school or riding a bike. I only wondered if we'd make it through that day. Yet, here we are - exactly 8 years later - and I come to Children's again the day after Christmas - WITHOUT JAMES. Last I called home, he was out shopping with his brothers - trying to catch those after Christmas sales to spend the money he'd gotten for Christmas. I'll bet he'll even talk his dad into letting him ride his new bike today, even though it's probably too cold.

I think of all this today and I can only say...THANK YOU, LORD. It wasn't anything I did. It wasn't anything Dr. Goldman did - although we thank the Lord for him all the time. But it was God that has allowed James to still be with us in wonderful health EIGHT YEARS LATER! He is so good!!!!

I will let you know how Johannah's EEG goes when we get home and if there is anything new. Thank you so much for your prayers.

Saturday, December 16, 2006 5:43 PM CST

James has had a rough time this past week and I was so afraid we had another line infection. He was pretty sick three nights in a row and his white count started rising. He continued on the antibiotics he was given before his line was placed and I started giving him the oregano oil again that Patty Merkle suggested. After a few days, he stopped throwing up, but was pretty tired the rest of the week. We ran every test possible to find out what we were dealing but, but things have seemed to normalize. So, I think maybe it was just a bug (I pray I am not wrong). Unless you have a child like James, I don't think you will ever understand what these parents go through with every "bug" that comes around. The impact of these "mild illnesses" can be devastating for these kids and you are always wondering if its the tumor, the shunts, or what. I'm just thanking the Lord that it doesn't seem to be another line infection.

Johannah is doing much better. She hasn't had a seizure in a week now. She seems more tired though. Now I worry that the 4-day EEG after Christmas might be useless. I'll have to call the doctor and see what he thinks.

Joe's finger is healing fine. I think he should be back to wrestling after Christmas break.

Thank you so much for your prayers. We know they make a difference.

Leiann

Thursday, December 7, 2006 10:15 AM CST

I'm sorry I didn't update right away. Things just seem to never slow down. The surgery went well - considering. It lasted 3 hours (normally a procedure like this would take 45 minutes). The surgeon needed to do 4 venograms (dye studies to find open vessels) and attempted 3 vessels before finally getting it in. BUT, IT IS IN!!!! PRAISE THE LORD!!!!! He is doing well - just a little sore.

Johannah saw the neurologist before James' surgery. He agreed that the Keppra isn't working. We are adding Neurontin - first just at night and eventually in the morning also. It will take a few weeks to get the Keppra weaned. And she remains on the Lamictal. So, right now, her medications consist of Lamictal 150 mg twice a day, Keppra 500 mg in the morning and 1000 mg at night, and Neurontin 600 mg at night. They are also going to admit her to the hospital the day after Christmas to do a four-day EEG. They are really hoping to catch her seizures on record. The way things are going, that shouldn't be a problem. She's had a seizure the last two mornings. They do seem much less intense. In fact, she managed to get into school at 10:30 yesterday morning and 9:30 this morning. I don't know if that is how it would have been anyways or if the Neurontin is helping. Either way, its good that she doesn't miss the whole day.

Joe's finger seems to be doing well. He will see the orthopedic surgeon tomorrow, who will be checking to make sure its healing properly.

The kids are counting the days until Christmas break. Janice, a friend from St. James Hospital who always sends things for James, sent James a Nintendo game yesterday for Christmas. The kids have never had a Nintendo. I don't think Dave has either, because he was playing with it this morning. He said he had to check it out and make sure it worked :) Thank you, Janice, you are always a blessing to us.

Thanks for all your prayers.

Friday, December 1, 2006 8:41 AM CST

James surgery is scheduled for Monday. That is so perfect since Johannah has an epilepsy appointment in the morning. Continue to pray that God will guide the surgeon to get this line in smoothly.

Thursday, November 30, 2006 4:22 PM CST

No surgery!!! The right-sided pain that James has had since Thanksgiving was only getting worse and his urine showed up with bacteria - which probably means we are dealin with a urinary tract infection. We went back to the doctor today to do the urine tests again. She also did a CT to rule out appendicitis, which was fine. But, the surgeon is wanting to put the surgery off until things are settled - which is probably a good idea. It will probably be at the end of next week. I will let you know.

Please continue to pray that the surgeon will have guidance in getting this line in smoothly. Pray that this infection (or whatever it is) clears up quickly and James is feeling better. And don't forget Joe's finger and Hannah's seizures. Your support in prayer is appreciated more than you can know.

Tuesday, November 28, 2006 10:17 PM CST

ANOTHER very long day - but the surgery date is set!!!!! He will have another catheter placed on Friday. It seems that an ultrasound shows there is a possibility on the left and the right sides. So, the surgeon will be trying the left first and, if that fails, the right. She won't have to remove the PICC line until she is certain that another catheter is placed and works. I'm telling you, I think Dr. Reynolds moved mountains today - for which we are very thankful.

The appointment wasn't long. We were only there for a total of three hours and managed two visits with Dr. Reynolds with an ultrasound of his chest in between. But, when we started to leave, the valet couldn't get our van started. At first we were very concerned, we just bought the van yesterday (used). Dave went to the garage and looked at it. I'm not sure I can explain what he said was wrong, but in a nutshell it seems that someone "tinkered" with some wires. He says that the way the wires were - we would never have been able to drive there. We're not sure, but we think we might have been victims of a "Chicago" scam attempt. Either way, Dave found the wires, put them back where they belonged, and the van started right up.

This morning, Joe was seen by the orthopedic surgeon. He did not feel that the tendon is torn, but he does think there are two fractures, not one. Thankfully, he doesn't think Joe needs surgery, just splinting and no wrestling.

Hannah started this morning with an hour of those eye-fluttering petit mal seizures - so many that I was sure she was going into a convulsing seizure at any time. But, I had her go back to sleep and when she woke she was better. Thankfully, she will be seen by the neurologist on Monday. I talked today - while at Children's - with one of the nurses that is quite familiar with Johannah. She thinks its time to have another 24-hour EEG done and re-evaluate Johannah's case. One thing I had never realized - that she let me know - was that the petit mal seizures that Johannah has are not indicative of a BRE diagnosis (Benign Rolandic Epilepsy). So, this means that Johannah has two things going on - which makes the case so complicated (like a Neubauer could ever be a simple case).

Okay, it wasn't such a bad very long day. When we got home tonight, the boys had remembered my birthday and bought me a new electric griddle. They are so sweet. Just another reminder of how good God has been to me.

Your prayers are greatly appreciated. Pray for James' surgery - that it goes smoothly and God will guide Dr. Reynold's hand in getting this catheter in. Pray for Johannah - that she will be safe and that the doctors will have wisdom to get these seizures under control. Pray for Joe - that his finger will heal correctly.

Monday, November 27, 2006 11:29 PM CST

Another long day! We started the day with Johannah having another seizure. Since she has missed so much school already (staying home after each seizure because of severe headaches), we attempted to have her go to school today anyways. The seizure didn't seem "as bad," so I gave her some Tylenol and told her to give it a try. Bless her heart, she stayed the whole day. But I'm not so sure it did much good to send her. She really felt terrible and I'm not sure she learned much. Homework this evening only got worse. The neurologist has decided (with much persuasion) to move her appointment up to next Monday since the seizures seem to be coming more frequently.

James has struggled with some unusual chest pains the entire weekend. He came home today and mentioned that he had been crying in school because his chest hurt, so I decided it was time to get it checked out. I took him to the ER and they ran a CT scan which showed no lung nodules (which is what I had been worried about). It did show a very small density in his left lung (the pain is on the right - so they are most likely not related) which the doctor felt might be a very slight pneumonia and she gave him an antibiotic, just to be sure. It didn't answer the right-sided chest pain though.

Joe went along with us to the ER. He had smashed his finger in wrestling (I told you I don't like wrestling) and we thought it was probably broken. Well, the end is fractured and the doctor feels that the tendon is probably torn off because the finger cannot be straightened. They splinted it and we have to see an orthopedic doctor next. It looks like it will probably need surgery.

James does finally have an appointment with the surgeon tomorrow at 2:45 p.m. and they assure me we will be setting a surgery date. Hopefully the morning's dressing change will be the last one I have to do.

Monday, November 20, 2006 6:57 PM CST

I did another dressing change on the PICC line last night and I really don't like the looks of it. James' skin is really not liking the stitches that hold the line in place. One has already given way and the other looks like it will go soon. Thankfully, the Sorbaview bandages that we use hold the line in place pretty tight. But, as the skin area gets worse, the dressing changes get harder for him. I put a call into the surgeon's office today to see if they have an appointment yet, but nothing. I was really hoping to get the new catheter in before Thanksgiving, but it's not going to happen. Pray that this PICC line lasts until we can get the other line in.

Johannah had another seizure this morning. Poor thing landed just inside her bedroom door with it closed, so it took Dave and I some time to reach through and push her away in order to get in. Her back is all scraped up, but she says it doesn't hurt - just the usual bad headache. I called the neurologist's office today in order to make another appointment. I think its time to sit down and review her treatment plan again. It dawned on me the other day that, although Johannah only has a convulsive seizure every couple of weeks, that is how many she had before we switched to Keppra. Maybe it is time to determine that the Keppra isn't working and we need to try something else. I have gathered some information from other parents of BRE (Benign Rolandic Epilepsy) patients with regard to what has worked and what hasn't and I will be presenting it all to the neurologist to see what he thinks. Pray that we all have wisdom and can get Johannah's seizures under control.

The older boys just finished a week-long teen conference (Empowered Youth). They really had a great time. Now they have started the wrestling season. I HATE the wrestling season - I'm a mom. I've told them they are not allowed to tell me about practice.

Thursday, November 16, 2006 10:21 AM CST

Oncology clinic is usually very hectic (which is sad to me to think that there are that many children with cancer just in our area), but yesterday seemed especially chaotic. I had a feeling that this joint meeting with the surgeon wasn't going to happen - and it didn't. But to add to the confusion, when we got there out appointment with Goldman had also been cancelled. So, we were there at 11:00 a.m. with only an eye appointment at 1:30 p.m. I told them I really needed a physical done for Houston, but because we had been cancelled, we weren't on the list to be seen and there are no one available to do it. We waited around hoping they would find someone to do the physical. At 1:30 we went for his eye exam (which he did really well on, I am anxious to see the results). Finally, we were able to talk one of the nurse practitioners into doing the physical for Goldman. We left around 3:00 p.m., never having seen the surgeon. I am awaiting a call from the secretary for the surgeon, who is seeing where we can squeeze James in since she is booked for quite some time. I had a feeling a while ago that I should have called the surgeon myself.

Otherwise, he is doing fine. The PICC line is holding up. One of the two stitches holding it in place has already come out, but the Tegaderm holds it on okay. We are just being as careful as possible. I really don't know how people makes these things last 6 months. Jackie, the nurse practitioner, told us yesterday that she has seen them last for a year. Someone tell me what I am doing wrong!

Johannah wasn't feeling well today - I hope she does okay. Her neck has been hurting for a couple days, not sure why. She did have another seizure two days after that last one, but none since. She is now on Keppra 1000 mg in the morning and 1250 mg at night and Lamictal 150 mg morning and night. I wonder if at some point we should conclude that the Keppra isn't working.

Thanks for your prayers and for signing the guestbook to let us know.

Leiann

Wednesday, November 1, 2006 7:44 PM CST

James is doing well. The PICC is holding up so far, although one of the stitches did not look so good so I will probably do the next dressing change sooner. We still have not heard when we will meet with the surgeon, but I suppose we have time - I am hoping the PICC line lasts until Thanksgiving. The last blood culture came back negative - so he is officially and FINALLY free of infection. He has been back on treatment and doing well - up to 160/15. His next MRI is this Saturday. I suppose we can't be too hopeful for a decrease in the tumor, but considering he had been off treatment for a good six weeks, I will be thankful for stable this time.

Johannah still struggles with the seizures. She had another one yesterday, Tuesday. This one I caught since she was in the bathroom. It always makes me feel so bad when she ends up having one in a place where she falls and gets hurt. She did not injure herself badly, but did fall. Our bathroom is so small that it was tricky even getting in there to get her as she was blocking the doorway where she fell. I even counted her pills this time to see if there was a possibility that she wasn't taking them properly, either on purpose or by accident, but they match up - so that is not the problem.

Thanks for your prayers. It seems like a rough week for us, but I know its been a rough week for many. A couple of the other children that we know who have brain tumors passed away this week and an adult patient who had done very well on antineoplastons but died from complications from radiation necrosis. Our prayers are certainly with those families.

Leiann

Saturday, October 14, 2006 1:28 PM CDT

Sorry that I haven't updated. We are home now. James did end up losing the port. When it seemed that we just weren't going to get his cultures to clear of infection, the surgeon went in and attempted to change the catheter over a guidewire. Because the last line was difficult to place and ended up needing to take a "round about" route through the neck, changing it over a guidewire was not possible. So, the line was just taken out. The next day, they put a PICC line in his arm and we went home on IV antibiotics. The PICC line probably should not have been put in until his blood was cleared of infection - but someone inadvertantly ordered it. Now, we just wait. First, the blood has to be cleared of infection. We are doing daily blood cultures until we get a couple negatives in a row (hopefully they will all be negative now that the infected port is out). Then, the wounds in James' chest (which are pretty significant) need to heal completely before a surgeon will consider putting another line in. We are planning to meet with a vascular surgeon in a couple of weeks to talk about another line. It is our hope that a vascular surgeon will have more knowledge of the heart vessels to help us get a line back in his chest.

Please pray that James' blood will clear of infection. If there is infection, this could stick to the PICC line that was placed and we will still have an infected foreign object in his body. Pray that the wounds in his chest heal well without any infection. Pray that the surgeons (whether vascular or general) will have wisdom to get another line placed in his chest. And, probably above all, pray that when we get James back on the antineoplastons - it will work. It has been our observation that when a patient is off treatment too long or too sporadically, the treatment will stop working. It is our fear that this will happen to James. If we were not looking at such a difficult time getting another catheter in, we would have let them remove the port long ago so that this ordeal would have been shorter.

Thanks for your prayers - they mean a lot to us.

Leiann

Saturday, October 7, 2006 11:52 AM CDT

I took James to the hospital Thursday afternoon, fully intending to let them remove the port. It didn't look as bad as Wednesday night, but I had gotten to the point of not wanting to put James at risk. When we got him into the ER and everyone got looking at the port site, they all agreed that it didn't look so bad. He was admitted to start him on IV antibiotics and come up with a plan from there. On Friday, everone that came agreed that the site didn't look so bad. It looked even better Friday than Thursday. On Thursday night, we even tried to get a culture of the drainage, but there wasn't enough to even culture. Surgery's plan Friday was to, if needed, take him to surgery next week and move the exit site of the line over - but save the line. Oncology's plan was to switch him to a stronger oral antibiotic and send him home. They felt that the port site didn't look bad enough to warrant IV antibiotic in the hospital. BUT.......then the infectious disease attending doctors came. Know that up until now, we had seen several of the infectious disease residents who ALL agreed that the port did not look bad and shouldn't need to come out. The doctor that came Friday afternoon from infectious disease was the same one that, when James had an infection last summer, blamed it all on the antineoplastons - so we knew we were in "trouble." As expected, within a half an hour of that doctor seeing James, the plans for oral antibiotics and discharge were cancelled. The oncology resident came back to tell us that, AT THE LEAST, we would be in the hospital for the weekend with IV antibiotics. So, that is where we are now. The cultures drawn in the ER are negative thus far. The wound is healing and scabbed over. An echocardiogram was done. I haven't seen the results, but I will see what they say today. Our prayer is that things can only look even better by Monday and there will be NOTHING to uphold the plan to remove the port. We would really appreciate your prayers also. Today I called to the hospital (Dave is staying with him for now) and James was complaining of a headache and was quite "fussy." I'm not sure if something happening that he really is feeling sick or if he's just tired of the hospital. He's in isolation, so his movement is limited. Anyone that knows James will know that he loves to get around and see everyone. Feel free to give him a call and cheer him up. The hospital number is 773-880-4000 room 725-1.

Thanks,

Leiann

Thursday, October 5, 2006 0:05 AM CDT

I guess I spoke a little too soon. The wound didn't look so good tonight and it was very sore. The good thing is that the white cell count was in the normal range yesterday, so that is a good sign. I am going to leave the needle out for the entire weekend (which means he won't be on treatment) and see if we can get this to heal once and for all. PLEASE, please pray with me that this will heal. Pray that we will have wisdom to know the right thing to do. Pray that the doctor's will have wisdom, should the port be removed, to find a good place to put another. We really need this to resolve so that we can get him back on treatment.

Thank you so much for your prayers.

Leiann

Wednesday, October 4, 2006 9:57 AM CDT

Things are looking much better. The wound is finally healing. About a week ago when I bought some more Neosporin for his wound, I had somehow picked up a cream form rather than an ointment. I didn't figure it would make a difference, it was the same stuff with the same strength. But, evidentally the cream wasn't working. I went back and bought the ointment and it has really made a difference. He is going to have a CT of the lungs today that we pray will show that the lung nodules are cleared up. Cultures of his blood will be done on Friday, which we also pray will be clear. And another good thing.....HE GOT A 100% ON HIS NEXT SCIENCE TEST. He really needed it since he had failed the last two. It takes more time and effort in the evenings to get things to stick, but he is working hard and making progress. Thanks so much for your prayers.

Leiann

Sunday, October 1, 2006 3:34 PM CDT

Just a quick update. James' sore is still not quite healed. It doesn't seem to be getting worse though. Please really pray that this sore will heal. The cultures remained negative and we are awaiting a call from Dr. Barbara for what dose they want to put him back on. But, with the sore by the port, things could change at any time.

Johannah's having a rough day. Although I didn't see it, I'm pretty sure she had another seizure today. When she got up, she really looked like she does after a seizure. I can't explain it in words, its just the way her face looks - confused and disoriented. I told her to lay down again and she went back to sleep FOR HOURS - a good sign that she had had a seizure, she doesn't usually sleep that much. Now, her head really hurts. Her teacher had offered to take her on an overnight trip for their candy sale, but I just can't do it. Her seizures are just too unpredictable.

Thanks for the prayers - it is what carries us through.

Leiann

Monday, September 25, 2006 10:14 PM CDT

I don't know why I was surprised that today was such a hard day - like I expected it to be easy when I knew the doctors would want the line out and I would want the line to stay :)

As expected, Dr. Goldman, the oncologist, said the line needs to go. Then, Dr. Katz came in from infectious disease and, after consulting with Goldman, said the line needs to go. So, round and round we went. James does not have a fever. His cultures are still negative (even as recent as last Wednesday's cultures), his lungs are doing much better, and there is nothing showing up in the heart. So, I could not see that there was reason significant enough to remove a line that most probably could not be replaced again.

What Dr. Katz did say was that, in light of the cultures being negative but pus draining from the site, it was possible that what we had was infection inside his skin, but on the outside of the port - and I agree, that is possible. He said that since James had been on antibiotics for the last month and he still had pus, the possibility of getting rid of it with more antibiotics was pretty slim.

But, I just kept asking, "If you remove this port because of the possibility of an infection outside the port and then a new one cannot be placed - then what do we do?" He didn't have an answer for that - only that from the infectious disease standpoint, the line needed to go. I simply asked them to look at the whole picture - everything that James needed - not just the infectious disease picture.

In the end, they were bent on removing the port and I was bent on keeping it, at least until there was definite reason to remove it. I guess you could say that I won - James still has the port - but I got the impression that they are just "appeasing" me for now and that they still intend to remove the port.

The port was accessed today to the side of the little sore and cultures were drawn again (as well as from the arm). James also had an echocardiogram done which showed no "vegetation" (infection) on the hard. They did find what Goldman called a "clot," (but I definitely got the impression he didn't mean a blood clot). He said it was either an infectious clot or scar tissue from a previous line. Since he has had multiple lines, I think it is quite possible that it is just scar tissue.

The "tentative" plan is to put him back on the IV Ancef. He will be going in sometime this week for a CT of his lungs. This is to check the status of the lungs (although they weren't too concerned about the lungs today) as well as to check the vessels in his chest to see WHERE/IF another line could be placed if this one does have to be removed. The cultures should be back by Thursday. I am assuming that if all goes well, he will be able to keep the port. So, keep praying!

But, there was one really good thing about today. We got to see our wonderful friend, Peggy, who is a volunteer that is only there on Mondays. Peggy has been such a blessing to us. Thank you for brightening our day!

Anyways, that was how our day went. I will keep you posted.

Prayerfully,

Leiann

Saturday, September 23, 2006 5:22 PM CDT

Well, we received a call back from the surgeon today. After consulting with the infectious disease doctor, he said that she felt the lung nodules are from an infection in the heart, which all indicates a bigger problem. She does not feel that the antibiotics should be discontinued. She also feels that we really need to take the port out - which the surgeon here does not feel comfortable doing on an 8 year old. So, I guess the bottom line is we need to go to Chicago.

I will take James in on Monday morning. I am hoping that before anything is done, they will run blood cultures again, a CT scan to check the lungs, and an echocardiogram to check the heart. If all these things are negative, I am hoping and praying that we can still keep the port. If any one of these shows adverse results, the port will need to come out. If that is the case, we will need to find the best surgeon possible that will be able to find a place for another port.

In the meantime, I am keeping the port de-accessed (the needle out). I am cleaning the site and covering it with Neosporin ointment and a bandage. I also started him on oregano oil capsule, which I am told will combat infection. At least I am doing something since he is not able now to get the IV antibiotics.

Thanks for the prayers. I will let you know what happens after our trip to Chicago Monday.

Leiann

Friday, September 22, 2006 11:30 PM CDT

When I took the needle out this evening to give James a bath, there was, again, pus drainage. I put in a call to Dr. Tattersall, the surgeon. We are going to try leaving the port out for the weekend (if the infectious disease doctor okays him not having antibiotics for the weekend - as he has already been on antibiotics for a month). Please pray with us that this site will heal quickly and completely. If it doesn't, James will after all lose the port and need another one placed. Pray that Dr. Tattersall will be able to take care of the case so that we won't need to have a Chicago hospital stay. Pray that the lung nodules (infection) will be cleared up and stopping the antibiotics now won't be a problem. As of yet, it looks and seems to be a small matter - but has the potential of becoming a serious problem for James.

Marilyn, the nurse from Houston, thinks that James has the diarrhea from all the antibiotics depleting his "flora" in his intestines. So, I will try to get him some probiotic tomorrow, which should help if that is the problem.

Thanks so much,

Leiann

Friday, September 22, 2006 10:50 AM CDT

I suppose because of all the antibiotics that James has taken over the last month, he finally got a bad case of diarrhea - so he is off treatment for a day or so. Hopefully, lab work tomorrow will look good and he will be back on. On a good note, Dr. Khan, the radiologist from Houston, reports that James last MRI reveals the tumor shows no change from the previous MRI and an overall decrease of 25 percent from the baseline MRI.

Thanks for all the many prayers.

Leiann

Thursday, September 21, 2006 11:08 AM CDT

We met with Dr. Goldman yesterday and brought him "up to par" on everything that has been going on. He is pleased with the treatment that James received and how well he is doing now. He wants to continue to follow up on the CT of James' lungs, saying that if the nodules do not completely resolve he wants a bronchoscopy and biopsies. I pray that James will not have to endure that. One more week of IV antibiotics and then we will start running tests and see where everything stands.

James has three tests today in school - Math, Spelling, and Science. I pray that he does well. He really likes Math. He's averaging about a C right now simply from not being careful - he is actually really good at Math. Spelling is better. As long as he takes his time and thinks, he will do fine. Now Science, that's another story. The last test he got a 10% on. We studied last night and this morning - but he still struggles to remember everything. We will see what happens. His reading is still really bad - so we are thinking of getting him a tutor after school to continue to work on his reading.

Johannah is doing well. No seizures in two weeks.

Thanks for your prayers.

Leiann

Sunday, September 17, 2006 10:02 PM CDT

Up until last Thursday, it really looked like we might have to remove James central line. But, when we did the blood work on Thursday, all his results came back in the normal range for him. PRAISE THE LORD! I am hopeful that we may be turning a corner. The CT scan showed that the lung nodules are improving. He still has just over one week left of the IV Ancef. Then, we will run blood cultures again. Pray with us that this culture results will come back negative. Some other parents recommended using Oregano Oil capsules for bacterial infections. I am going to see if I can get some tomorrow. At this point, I will try anything to save this line. Otherwise, he feels very well. I'm sure he would appreciate continued prayers for 3rd grade. Its a little harder and different than 2nd grade. I'm confident that he'll do fine once he gets adjusted.

Johannah is doing okay. She's had some unusual chest pains this weekend. I'm not sure what that is about.

The big boys all had soccer games on Friday night. The varsity lost 7-1, but the jr. varsity won 2-1. I really enjoyed watching them play.

Its going to be a busy week. I need to get James in to see Dr. Goldman. I need to get all the test results sent to Houston. Joe needs an MRI that has been pending since summer and a repeat of urine (he had blood in his urine a few weeks ago).

Thanks for your prayers.

Leiann

Thursday, September 7, 2006 8:49 AM CDT

We did go home last Friday and James started school on Tuesday. He really likes third grade. He will continue to get IV antibiotics for another 3 weeks. I sent blood work last night to see where we stand and if Dr. Barbara wants him to start back on the antineoplastons. It really doesn't look so good, but I don't know that it's alarming. WBC is still a little low as well as hemoglobin. I'll see what she thinks of them today. He will get another CT scan of his lungs in about a week and then see the infectious disease doctor to follow up on the lung nodules. Then we will run blood cultures once the antibiotics are done.

Johannah stayed home from school yesterday because she was having a bunch of small seizures and we feared she was getting ready to have a grand mal. She never did and was okay the rest of the day. This morning, I woke her to get ready for school. She seemed fine, but then did have a grand mal within 5 minutes of getting up. Maybe if all goes well, I'll try to get her into school halfday.

The big boys had a soccer game on Tuesday and won 4-0. Joseph is the goalie now and did a great job. It was exciting, since they had lost the first game.

Thanks for your prayers. WE REALLY NEED THEM!

Leiann

Thursday, August 31, 2006 5:53 PM CDT

They say we're going home tomorrow!!!! We pray that it is true. The echocardiogram showed that his heart is clear of infection. Thanks for your prayers.

Leiann

Wednesday, August 30, 2006 10:21 AM CDT

James is still in the hospital. Before going home yesterday, James was really complaining of his right side hurting - up high. So, they ordered a CT scan of his chest. This scan showed that James has multiple nodules in his lungs. We are assuming that these nodules would be pockets of infection. It would be highly unlikely that it would be metastasis - since James tumor is benign. But, needless to say, the doctors are very concerned. An echocardiogram was ordered today to check his heart - but the results are not back yet. Please continue to pray for James (and Chase - who is home, but still fairly unresponsive).

Leiann

Monday, August 28, 2006 10:33 AM CDT

We didn't get out on Sunday after all. The cultures that they drew on Saturday came back positive again, but the vancomycin level came back subtherapeutic. So, they have increased the vancomycin. The clindamycin sensitivity came back resistent, so that will be stopped. I'm not sure if they are going to add another antibiotic instead. They have also added a vancomycin flush that is locked into the line between the regular dose - in hopes of killing the infection in the line. I'm not sure when we will go home, but I don't think it will be too much longer.

It really has been easier being closer to home and the nurses and doctors in this hospital have been so wonderful. I was able to get home last night and make sure the kids had what the needed for school since they start today. It was also nice to be close since I got a call from the sitter this morning telling me that Johannah had another seizure. I was able to run over there and bring her to the hospital with James and I.

Thanks for the prayers. PLEASE continue to pray for Chase and Leo. Last I heard, Chase is still unresponsive and the doctors are wanting his family to sign a DNR (Do Not Resuscitate order) - meaning they are giving up. Many prayers are needed.

Friday, August 25, 2006 7:34 PM CDT

James is doing fine. He is in the hospital - St. Anthony's in Michigan City. We decided to go local in hopes of getting the antibiotic started sooner and not having to stay too long. Dr. Paik and the nurses at the hospital have been ABSOLUTELY wonderful and have done a great job. His cultures were drawn last night and he was started on Rocephin right away. His culture from the line did come back positive - but not the culture from the arm yet. I pray that means we caught it early. This morning, his antibiotics was changed to clindamycin and vancomycin to match the culture results. We would have gone home to finish antibiotics, but there has been confusion in getting the home health supplies lined up - so James is still in. He will go home either tomorrow or Sunday and finish the antibiotics there. Thanks for your prayers.

PLEASE, please pray for a little friend of ours, Chase (www.chasesammut.blogspot.com). He has a brain tumor and is not doing well - is unresponsive now. It is in God's hands. Let's all storm God's throne with our request for this brave little boy.

Thanks,

Leiann

Thursday, August 24, 2006 4:27 PM CDT

James has been running a fever for a couple of days. We ran a CBC today and it doesn't look good - his white cell count is dropping. So, they want to start him on IV antibiotics - which we have to go inpatient for to get started. Pray that our stay will be SHORT - like one night! And pray that the infection will be cleared up quickly. We did this last year and James ended up having to have a new catheter line put in.

Johannah is doing well - no seizures and we are beginning to wean the Lamictal.

Thanks so much,

Leiann

Thursday, August 10, 2006 10:12 AM CDT

It's so easy to only post when something is going wrong. So, today I decided to do something different. NO BAD NEWS.

James continues to do very well. His dose is 220/20 and he is tolerating it very well. His next MRI will be on the 18th. He is finished with summer school and glad for a break of a few weeks before school starts. I met with his 3rd grade teacher the other day and we spent an hour going over the issues that James has with learning and the problems he deals with during school. His teacher is very understanding of James' limited vision and struggles with reading because she actually has only one eye (the other is glass). The other nice thing is that she is a veteran teacher - having taught for over 25 years now. I really think these next couple years (James will be with her for 3rd and 4th grades) are going to be good ones.

Johannah is doing well also. I thought we were going to have to look for another medication - as she had a rash for a couple days. It is better today and we have decided to continue on the Keppra. She has not had a seizure in two weeks. I'm a little nervous about school starting, but am confident that it will go well.

We all went to Chicago yesterday to see the Tall Ships. It really was a nice time. We did this to celebrate Jonathan's 17th birthday - which is today - HAPPY BIRTHDAY, JONATHAN!!!! I did take a bunch of pictures. When I get them back, I will try to post some.

Thanks again for all your prayers. They surely make a difference.

Leiann

Sunday, July 30, 2006 3:02 PM CDT

Johannah had her EEG this last Thursday - and what a day that was. Its a day that reminds me of when James was diagnosed with his brain tumor - when you realize that life is never going to be the same again. In my mind, I have resisted the thought that Johannah might truly have epilepsy - but can fight it no longer.

We woke Johannah at 4:30 a.m. to get ready to go to Chicago. She really didn't look good, but I thought maybe it was because she was getting up so early. I sent her to get her medicine and then to get dressed. I guess I felt that since the other grand mal seizures happened when she was actually waking and now she was up and moving around, she was okay. But, she wasn't. A little later, I checked her room to see if she was ready and she was on the floor - already postictal (the confused and many times unresponsive time following a grand mal seizure). We let her sleep for a short time and then head to Chicago. She seemed fine on the way to Chicago - as she always has soon after the grand mal. She even did fine during the EEG - which is reported to show nothing new. But, on the way home from Chicago, she started seizing again - with the eye fluttering that she has done for the past two years, but constantly - which has never happened. By the time we got her home, we had to help her into the house and get her into a safe place since we suspected that she was going to have another grand mal seizure - which she did. The difference now was that soon after having this seizure, she started again - and it continued for the next hour or so. We finally called Children's, who recommended that we get her to the local ER. Believe it or not, after having to practically carry her to the car because she was seizing so bad, by the time I drove the five minutes to the ER, the seizures stopped - never to start again. They went ahead and gave her Ativan in the ER to make sure they didn't start up again at home and we were given a prescription of diastat - a medication we can use at home to stop a seizure that isn't stopping. That day started at 4:00 a.m. and ended at 1:00 a.m. the next day. A day I'll never forget.

The neurologist has decided to go ahead and switch Johannah's medication. It is possible that her Lamictal level was just too low (as the blood level did come back low). But, if we attempt to increase the Lamictal and it doesn't work, we will be changing her medication when school starts - which won't be a good idea. So, he decided to go ahead and change now. He is switching her to Keppra. So far, so good. She is a little tired from it - which is expected - but I haven't seen any seizures yet.

We have always know that if there can be a good tumor to have (doesn't that seem wierd), it is the one that James has - although we would never have guessed it at the beginning. James' tumor is a very low grade tumor and doesn't cause as many deficits or have as quick of changes as the higher grade tumors. Well, I guess it is the same for Johannah. If there is a good epilepsy to have, it is the kind that they think Johannah has - Benign Rolandic Epilepsy. This type comes on around the ages of 6-10 and goes away around the ages of 14-16. I pray that they are right.

James is still doing well. Only one more week of summer school and then he will get a break before he starts third grade. I'm not really sure that I feel his reading has improved. Maybe its just not going to. He's had a couple of rough nights due to the medication increase of getting him back on schedule - but otherwise is doing well. His next MRI will be sometime in August.

Thanks for all your prayers. Please pray for wisdom regarding Johannah and for safety. I am very nervous about letting her out of my sight - but I know that I can't be with her at every minute. Please sign the guestbook too - it lets us know that we are not alone in this journey - but that others are walking it with us in prayer.

Leiann

Tuesday, July 18, 2006 11:29 PM CDT

Well, I think we have a plan - which always makes me feel better. First, the neurologist decided to decrease Johannah's morning dose back to 100 mg, with the evening dose remaining at 150 mg of Lamictal. Since the grand mal seizures happened after increasing - and two now - it is possible that they are from too big of an increase. But, again, they are just guessing (which is how neurology works - if you ask me).

I spent most of Sunday and Monday doing as much research as I could on epilepsy (although it is not officially her diagnosis, having had ongoing seizures puts her in that category). Many people who deal with intractable seizures (ones that won't stop) use the ketogenic diet with great success. This is a VERY, VERY high fat diet - low sugar and low protein. It is so high fat that is would make the Atkin's diet look low fat. Since we aren't dealing with such severe seizures - and since this diet is so incredibly restrictive that I don't think we could do it - I decided that it would be worth it to try the Atkin's diet for her - which in reality is just a modified version of the ketogenic diet. She's not real happy about this idea, but I'm not real happy about her continuing to have grand mal seizures. Those things scare me to death.

Finally, I am going to seek out a chiropractor that is experienced in dealing with epilepsy patients. I learned that patients who deal with seizures after having had an injury, at times have a cervical malalignment which is contributing or even causing the seizures. Since Johannah had a pretty bad fall about five years ago in which she landed on her head - and then another fall a month ago when she had the first grand mal seizure - it is certainly worth checking out. Maybe it will help.

That's the plan!

James is also doing well. It seems so odd to have all his "issues" on the back burner - so to speak.

We do appreciate all your prayers. They really mean a lot.

Leiann

Sunday, July 16, 2006 12:25 AM CDT

Johannah had another grand mal seizure this morning. Wow - this is almost harder to deal with than James' tumor. I feel so helpless when she seizing. It frustrates me that we don't know why she has them and I don't know what to do to make them go away. I'll be calling the neurologist again in the morning and see if there is anything new we should be doing in light of another grand mal seizure. Your prayers are appreciated.

Leiann

Tuesday, July 11, 2006 6:59 PM CDT

Well, we finally got word from the insurance company and they have denied James treatment coverage. I do still believe that this is what God wants us to do and I do still believe, with all my heart, that God will provide. But, I would be lying if I said I wasn't a little disappointed. Please pray that we will have wisdom to know what we should do next - if anything. We are going to appeal the denial. We are also going to probably make a trip to Houston in the next couple of weeks to talk to the clinic about options. Above all, we are going to continue on this road. There is no doubt that God has brought us this far - and He will continue to bring us through, we must only wait and see what He has in store.

Thanks for your prayers - they mean a lot.

Leiann

Friday, June 23, 2006 8:19 PM CDT

JOHANNAH "STEALS THE SHOW"

If I ever again say that things are going fine and nothing unusual is happening in my life, someone SLAP me. The last time I told my doctor (that I finally went to see after being busy with James' chemo for two years) that things were going fine and my life was quiet - Jon had a grand mal seizure the next week and ended up in the hospital for three days. I swore I'd never do that again.

But, wasn't I just "bragging" at how well James was doing and what a wonderful summer we are having? Well, Johannah had a grand mal seizure this morning before she got up and fell out of bed - from the top bed of a bunkbed. When I heard the crash, I called to her - but she didn't answer. Then I knew something was wrong. Sure enough, when I reached her room, she was seizing and banging her head on the floor. Now - an ambulance ride and 5 hour ER visit later - she is doing okay, just a little banged up. She ended up with a fat lip and bruises on her cheek and forehead on the left side. We are pretty sure that she had the seizure first - which caused her to fall out of the bed - since her bed was wet and she does not usually wet the bed. The neurologist in Chicago said that he will be running another EEG and MRI now - to see if we can find anything new. Before, neither of these tests showed anything definite - other than she is definitely having seizures.

So, a few prayers for Johannah - along with James and the insurance issue - would be greatly appreciated.

Thanks a bunch.

UPDATE (06/26/06)

Johannah has an EEG scheduled for July 27th. That is the soonest they could get her in. That doesn't really bother me, I think its just going to show that she has seizures - which we know. But, we have still to schedule an MRI - which I really want sooner. She has been very dizzy over the weekend, the back of her ears hurting really bad, and sleeping more. Pray that we can get this test soon.

UPDATE

Thanks for the prayers. The MRI is Tuesday at 7:00 p.m. Can't ask for any sooner than that really. She is also going to see the family doctor in the morning to make sure the symptoms are not some type of ear infection or something. I will let you know what we find out. Thanks again for the prayers - we really appreciate them, more than you know.

UPDATE

Well, the MRI was clear and the family doctor said her ears and all looked fine. So, another "exciting" event with no explanation. She feels much better and is back to normal - it did take a while though. She will still have the EEG on the 27th, but I can't say that it will tell anything new. Thanks so much for all your prayers.

Leiann

Saturday, June 17, 2006 11:27 PM CDT

I know it's not Thanksgiving. But, when Dave asked me to change the song on the website, I thought, "What do I change it to?" I wanted something that reflected how we felt and where we are in this journey. It was only fitting to choose the song, "Give Thanks." Right now, we are nothing but thankful for what God has done. We asked God to give James strength for this treatment - and He has. James hasn't been healthier in years. We asked God to shrink James' tumor - and He has. It is 25 percent smaller since starting on this treatment. We asked God to give James a good summer - and thus far He has. He is going to camp, playing soccer, swimming, going to summer school and improving in reading everyday, and all-in-all doing very well. THANK YOU, LORD, FOR ALL YOU HAVE DONE!

Continue to pray for the insurance situation. We have not heard anything since sending James' information to them. Dave says, "No news is good news." I hope that is the case.

I certainly can't end without also being thankful for all our friends that have loved us and prayed for us for these last eight years. That means a lot to us.

Leiann

Wednesday, May 17, 2006 10:31 AM CDT

Saturday, May 13, 2006 8:18 PM CDT

James had his MRI today and it went very well. We brought the disk home and, personally, I think it looks good. I will send the disk off to Houston on Monday. I am also going to be sending a disk to Detroit, where a radiologist will review the scans and give an "outside opinion." James sees Dr. Goldman on Monday and we will see what he says about it. Other than that, things are going very well. I think he's doing better than he ever has. His first soccer game should be a week from this Thursday. I'll try to get pictures. Thanks so much for all your prayers.

Leiann

Friday, May 5, 2006 10:02 PM CDT

I picked up James' lab work from Monday and I was amazed at how well everything is. Sodium and potassium are in the normal range. Hemoglobin was even 11.6. Normal hemoglobin is 12, but we have not seen James' hemoglobin over 10 in a very long time. He is feeling great! He still has times when he throws up at night - usually once or twice a week. This is because he is off treatment during school and then gets a higher dose at night than he did before. It has taken him a little bit of time to get adjusted to this dose, but he is getting there. Thursday, he started soccer practice. That really meant a lot to me. James should have started soccer two years ago, but that was the summer he started on treatment. It was quite a rough summer and he certainly would have never been able to do it. Last summer, we thought he would play, but ended up getting the line infection that took most of the summer. So, this year he is ready and VERY EXCITED. He packs his bag the night before to make sure he doesn't forget anything. I watched on Thursday - he certainly doesn't keep up with everyone - but he tries with all his heart and seems to really enjoy it. I'm am praying that this will be a great summer for James.

We are working on the plans for a trip to Houston at the end of the summer. We are wanting to have a PET scan done in Houston to compare to the one done two years ago. This will give an idea of how much activity is still in the tumor. The decrease in enhancement that is seen on the MRIs would indicate less activity, but only a PET scan can tell for sure.

Thanks so much for your prayers. They are surely felt and appreciated. God has heard them and answered and James is doing very well.

Don't forget to check out the MRI scans that are posted. The link is right under his cowboy picture. They are a little confusing, nonetheless, I think you will be able to see the difference (bottom right corner is April of 2004, top left corner February of 2006, and the other two in between).

Leiann

Tuesday, May 2, 2006 10:23 PM CDT

I know that it has been two months and we are almost ready for the next MRI, but I finally got the MRI scans posted on here. Click on the "MRI Scans" link under James' cowboy picture and you will see them.

I hope it is not confusing. There are two boxes there - one of the axial view (as if looking from the top of his head) and one of the sagittal view (as if looking from the side of his head). The bottom right corner of each box is the MRI from April of 2004 - just before starting antineoplastons. The top left corner of each box is the most recent MRI from February of 2006. The other two corners are scans that are between.

You can see for yourself that there is definitely improvement. We are very excited and thankful to God for what he has done and is doing for James and our family. Thanks for your prayers.

Leiann

Saturday, March 4, 2006 10:32 PM CST

Dear Friends,

James MRI went very well. Chicago calls it "stable," as always. I have not yet heard what the official opinion of the Burzynski clinic is, but I wanted to share something with you.

When I took the disk home from this MRI, it was very frustrating. They had added a new program that made the disk much harder to get open and it took a lot longer. I kept mumbling and grumbling the whole time, "And this is supposed to be BETTER?" But, what I learned is that this new program allows me to pull up any MRIs on that disk, side-by-side, and compare them. Before, you could only pull up one MRI at a time. Thus, you would have to try to remember what it looked like when you pulled up the newer one. Not a good way to compare - but that was the best I had. The key, though, is that the MRIs that you want to compare have to all be on that disk.

So, what I did was call the hospital and ask for a disk with James' original MRI two years ago when starting antineoplastons, two more MRIs spaced between, and the most recent MRI. Although it is much harder and takes much longer, I can now pull up approximately the same cut on all four MRIs and compare them on one screen.

I cannot tell you what a difference this made. The four MRIs that I have are the first one, an MRI three months after that, an MRI six months after that (and 1 year before the last one), and the most recent MRI. When you look at those four MRIs, there is ABSOLUTELY NO WAY that ANYONE can say that the antineoplastons are not working. That tumor is DEFINITELY fading significantly.

It will take a little bit of time, but I am going to email the scans to a friend who will set up a link from this website to view the scans. Then everyone else can see also.

If I had any doubts, I don't now! We have definitely made the right decision. GOD HAS BEEN SO GOOD TO US!!!! Sure, the antineoplaston treatment is work, but the tumor is responding better than it would to chemo and, Lord willing, if the thing dies altogether - James will live a long life without the effects of radiation.

Thank you so much for all your prayers for James. He is doing very well. He managed to avoid the terrible illness that put Dave and I in bed for two weeks - and we still are struggling to recover. School is going well for him. Some might remember that Spelling was very hard last year. He is doing much better this year. Reading remains a struggle, but he continues to work on it. It will always be hard, I think. Tonight, we were playing the game Rummikub. I just learned how to play this game tonight. James wanted to play, so we let him play his own hand. Believe it or not, that kid smoked us. He was really good. I couldn't help but think how smart he is and this was the very reason why we looked for an alternative to radiation. THANK YOU, LORD!

One small glitch in his treatment right now is the insurance. They have not paid for the treatment since the beginning of the year. We found out that there is a new insurance representative that we have to go through to get the exception for his treatment. This could go smoothly (prayerfully) or she could be more strict and decide to deny it. Please pray with us that it will be taken care of smoothly. I have no doubt that it will be taken care of somehow. God has not brought us this far to drop us - and no doubt it is God that has brought us this far.

Love and prayers,

Leiann

Monday, February 20, 2006 10:04 AM CST

Sorry that its been a long time since I have updated. January was pretty quiet with not much going on. James was enjoying the new regimen of being off treatment during school and it was going well. We had the privilege of the whole family going to Disney World at the beginning of February for James' Make-A-Wish trip. I will have to tell you about it when I get a chance - we really had a GREAT time. Once we returned home, Dave and I got hit with the worst case of the flu that I have ever had. Tomorrow will be one week since it hit and we are still barely getting out of bed. James has a bit of a cough, but otherwise is okay. Today, we go for his MRI. If you read this today, please pray with us for good results. The Make-A-Wish trip made him miss a few doses that week and then he has been off the end of this last week because of his cough. I will let you know what the results are just as soon as I find out.

Love and prayers,

Leiann

Friday, January 6, 2006 11:45 PM CST

Just wanted to let everyone know that James is doing much better and is REALLY liking the new set up of having his pump off during school. We have decided to run his treatment (at the higher dose) from 4 p.m. each day until 8 a.m. the next morning and then have him off treatment during school. This will allow him to stay awake, avoid accidents, and have a much better chance of keeping up (which he was only doing by the skin of his teeth). The clinic, needless to say, is not real happy about the decision. BUT, just to see James get up in the morning and be anxious to get ready for school (rather than fuss and complain and think of every reason why he should stay home) and then to pick him up from school and hear what a good day he had - stayed awake, didn't have an accident, and really enjoyed himself, makes me believe we have made the right decision. He can actually TELL me about his day, whereas before he was so tired he didn't really know what happened all day. You would ask him, "Well, what about this or that," and he would just say, "I don't know." In all, James is getting more medicine in a 24 hour period than he did for the first year on treatment when he was stuck at 120/15 - yet saw a 19eduction in the tumor and much less density. He is getting now 1000 cc of A10 and 120 cc of AS2-1 - just in 16 hours rather than 24. We will give this a try and see what the next MRI says. Of course, if things don't look good, we will certainly go back to 24 hour infusion. Please pray that this will be effective on James' tumor - as the benefits are more than I can explain in words. We will have another PET scan done in Houston this summer and compare it to the PET scan done at the same facility two years ago, when he started treatment. We should be able to get an idea of where we stand with the effectiveness of the treatment.

Enough rambling, I just wanted to let everyone know how well James is doing. We have pictures from Christmas vacation (Jonathan got a new digital camera), but I am just awaiting him passing the pictures along to me.

Thursday, December 22, 2005 1:35 PM CST

James' MRI was fine with a clear spine. He continues to have occasional nausea and vomiting, so I have reduced the second bag of medicine by a little bit. I hope this will help.

Thanks for all your prayers.

MERRY CHRISTMAS,

Leiann

Friday, December 16, 2005 7:56 AM CST

James was off treatment for a little bit yesterday because his port was messing up - thus he felt much better. I am thinking his trouble is treatment-related, so I decided to reduce the A10 to 225 and see if that helps. He still complained of his neck hurting, so I am glad that the MRI is on Monday.

Thanks for your prayers,

Leiann

Friday, December 16, 2005 7:56 AM CST

Thursday, December 15, 2005 10:47 AM CST

The doctors have decided to move James' MRI up to this Monday night - just in case. He continues to feel lousy at night, but hasn't thrown up in several days. Yet, he is fine in the morning (except for the usual not wanting to get out of bed syndrome that all the Neubauer's have). I think they are also going to try to do a shunt x-ray series to check on his shunts. The nurse in Chicago thinks his symptoms sound like a shunt blockage.

Keep James in your prayers that either he will get feeling better or these tests will find the problem and it can be corrected (before Christmas).

Thanks,

Leiann

Supplements:
~Boswellia twice a day (anti-inflammatory)
~Bromelain twice a day (anti-inflammatory)
~Juice Plus twice a day (for potassium)
~Fish oil and flax seed oil three
times a day
~Whey protein (to boost hemoglobin)
~Ruta6/Cal-Phos twice a day.
~Antioxidant supplement
~Silybin (Milk thistle)
~Melatonin at night
~Multivitamin
~Probiotic
~Chlorella

Wednesday, December 14, 2005 12:42 AM CST

James hasn't been feeling well lately. He seems to be fine in the mornings and makes it through school okay, but he is very tired and feels terrible once he gets home. He has slept through a lot of evenings and even had episodes of vomiting. Then, he's fine again in the morning. We are going to check lab work and maybe move the MRI up. Please pray that, if there is a problem, we will find it and that James will get feeling better. If we don't move the MRI up, it is scheduled for January 23rd.

Thanks so much,

Leiann

Friday, November 25, 2005 2:16 PM CST

Just want to say THANK YOU to everyone who has been praying for James and our family. James is doing VERY well.

After giving blood for lab work several times a week for a year and a half now, James had asked one day, "How do they get the blood out of there to test it?" So, we asked the lab if the kids could have a tour and see how things are done. They were so kind and accommodating. We went for the tour today when we took James blood in. It was VERY interesting and the kids had a great time.

Now we are off to get a Christmas tree.

Thank you a million times over for praying for James. We know that James would never be as well as he is without God's hand in the situation. Therefore, we are incredibly grateful for those that intervene for him.

Leiann

Thursday, November 10, 2005 8:43 AM CST

MRI is stable!!!! And the eye doctor reports that James' vision is also stable!!!

Thanks for your prayers,

Leiann

Wednesday, November 2, 2005 6:29 PM CST

James had his MRI yesterday, Tuesday. It was scheduled for 6:30 p.m., but he did not get on the table until 8:30 p.m. I sure am glad that he doesn't get sedation anymore, or he would have been one hungry little boy. Since it was so late when the MRI was done, the department that makes the disks was not open anymore - so I was not able to get a disk. We will have to wait until we go back to clinic on Monday to get the disk and see what the doctor's in Chicago think of the MRI. If you know me, I'm not good at waiting. Pray with us for good results. James has been doing so well on treatment. He finally reached a dose of 240/30 - which is double what he has been on for the last year. He has been taking the supplements, but not regularly as things have been chaotic with the move. Monday, he will see the oncologist, but will also see the eye doctor. We are going to ask if glasses would even help a little - as in the past they have said they won't make a difference. James has really been having a hard time reading - which really effects his schoolwork. So, we are hoping that maybe some glasses might improve it a little even and help him with his schoolwork. THANKS FOR MUCH FOR YOUR PRAYERS. We really appreciate them.

Leiann

Tuesday, September 27, 2005 10:15 PM CDT

James has done very well until tonight. His dose is up to 180/30. His blood results are slowly recovering from his bout with the "flu," but not quite there yet. But, tonight he isn't feeling so well. He has a little bit of a rash again and his feet were hurting this morning again. So, I am going to try a short break for the night and start him back up in the morning. We pray that will do the trick.

We could use prayers this weekend. We have to move, the big boys all have projects due on Monday (two leaf collections and a bug collection), and, of course, all of James' treatment on top of it all. So, it is going to be VERY BUSY.

We really do appreciate your prayers and can surely tell that they make a difference. It is so easy to get discouraged and feel sorry for ourselves. This last week, another brain tumor child that we knew (only 6 years old) passed away. In fact, he had been doing better and it happened so suddenly. Although we are truly saddened for that family and pray that the Lord will be near to them, we are reminded of how far James has come and how good God has been to us. We are so thankful!!!

Love,

Leiann

Wednesday, September 21, 2005 10:06 PM CDT

I saw all the comments about the cabbage "success." Well, it wasn't so successful the second time. Almost an hour to get those few bites down. I think we might move onto broccoli and cauliflower. He likes those a little better.

James is doing very well this week. In fact, popped right out of bed this morning - quite a change from last week when he didn't want to get his head off the pillow because it hurt too much. I am really thinking all of that was that "flu" that his classmates had.

He is back up on his dose, in fact up to 165/27.5. We are very pleased - he has never been this high. We are hoping to slowly keep increasing to get him to a more therapeutic dose. I think the healthy diet and supplements are certainly helping him tolerate the higher dose and the suggestions for the rash that he used to get is really working too.

His lab results are slowly getting back to normal. Hemoglobin is still a bit low and his liver functions are still too high. We are praying that this will normalize soon as he slowly recovers from that "flu."

School is also going well - even spelling.

Thanks again for all you prayers.

Leiann

Sunday, September 18, 2005 2:17 PM CDT

I'm almost afraid to say it - but James is feeling better. Seems like every time I think its over, then something else. It does seem, though, that we are getting to the end of this. I am thinking more now that it was this "flu" that the other kids in his class had. Of course, the "flu" does more damage to James than other kids.

He is back on treatment and back up to 160/25. We had hoped to get past this dose before James got sick. I think if all goes well, sometime this week we will again try to increase the dose.

James is not liking the new diet very well. We tried cabbage with supper the other night and that was quite an ordeal. His first questions when he had finally finished was, "When do we have to have cabbage again?" I assured him, at the least, it wouldn't be the next day.

Thanks again for all your prayers. Do keep praying - as we are hoping to really get James' dose up higher and hopefully more effective on the tumor. Pray that we all get adjusted to the new diet.

Love and prayers,

Leiann

Saturday, September 17, 2005 5:39 AM CDT

On the day of the ultrasound, we have a few more complications. We needed to send James blood work in as his potassium had gone very low the day before. But, when trying to get it, the port stopped working. So, we headed into the hospital early in hopes that the nurse could fix that.

They did get it unblocked (thank you Stephanie) and we were able to get the lab work done. We had doubled James' potassium supplements the day before as the potassium had gone to 2.5 (that is very low). James had felt well that day, but was sick again all night. So, no surprise, the potassium was only worse - 2.1.

We kept him off treatment, increased the potassium supplements again, and made him eat bananas and milk (many know he is not that fond of bananas - but he cooperated with a little incentive). It did the trick - the next day his potassium was 3.5, so he was back on treatment.

The abdominal ultrasound was done and I have not heard anything. I am praying that no news is good news.

James did get back on treatment yesterday, but with a few headaches still and his stomach hurting. I did find out yesterday that there are a couple kids in his class that are out with the "flu."

Thank you for your prayers. It has certainly been a long couple weeks for James. I think we are seeing a light at the end of the tunnel - but we could not do it without the prayer and support of our family and friends. Do sign our guestbook so we can know that you have visited. Just knowing that others are praying for James is a great encouragement to us.

Leiann

Wednesday, September 14, 2005 9:40 PM CDT

What a long week!

James had his MRI last Thursday. It seems that the tumor is stable, but maybe slightly more enhanced. Not what we would have liked, but certainly not unexpected since he was off treatment for 6 of the last 8-10 weeks.

We are slowly working on getting James (and the rest of the family) on a healthier diet. That is quite a job for a family that could survive on McDonald's hamburgers and french fries. We believe that this step will give James' body a better chance at fighting the tumor and it certainly couldn't hurt the rest of us.

James has again had a rough time getting back on treatment - similar to when he first started treatment. Along with the change in diet, we have added supplements (per the recommendations of a nutritionist) that will give him the added help he needs. We are praying that these things will make a difference and the treatment won't be such a struggle this time.

Tomorrow he will have an ultrasound of his belly. He was complaining of a belly ache today and the doctor wants to make sure we aren't dealing with an appendicitis that is being masked by other problems.

Thanks for all your prayers. Please pray that James will get feeling better and the treatment will do the job on the tumor.

Love,

Leiann

Monday, September 5, 2005 10:56 PM CDT

Just three more days until James' next MRI. I am getting anxious. I know there might not be much change since he was off treatment for six weeks due to a line infection. But, I can't help but hoping that progress might be there anyways. James has done well after getting back on treatment (except the leg pains). He is up to 160/25 - which is much better than he has ever been. We are praying that getting up to the higher dose will have made a difference.

James still struggles with his feet hurting. I am not sure what we are dealing with. He always feels better after getting up and getting going, but it never goes away completely.

Pray that James' feet will feel better, that his MRI will go well, that the tumor will be shrinking, and that his sight will also remain stable. Thank you so much!!

Please also pray for some special friends of ours. John and Mark both have GBMs. They are having a tough time right now and their wives, Evana and Marilou, are very tired. They would really appreciate your prayers also.

Thanks,

Leiann

Thursday, September 1, 2005 10:47 AM CDT

James woke with the same leg pains and pain in his wrist this morning. Since several I spoke with recommended that it might be "growing pains," I decided to get James up and make him get moving anyways. He was not too happy, but by the time we reached school, he was doing okay. Seems like that might be the answer. I am still not sure, but I do pray that is all it is.

To add to the morning, James' pump broke. I sent him to school without it, but will have to get him at lunchtime and bring him home. He will have to get his treatments with a manual drip until a new pump arrives tomorrow. I have never tried the manual drip, but I am willing so that he won't have many more disruptions in his treatment. Seems we have had too many lately. It makes me a little nervous with his next MRI coming up on September 8th.

Thanks for your prayers.

Leiann

Wednesday, August 31, 2005 5:51 PM CDT

James is feeling better. The tests at the hospital were all negative and the pain seemed to lessen. So, in the end we don't know what the problem was and hope it doesn't come back. Thanks for your prayers.

Leiann

Wednesday, August 31, 2005 8:52 AM CDT

James woke this morning in severe pain in his legs and right arm. We have tried Motrin as well as a small dose of hydrocortisone (mild steroid) and he doesn't feel better. He is now complaining of his head hurting. So, we will take him into the hospital. Just wanted to ask for prayers in case anyone checks in. Thanks. We will update as soon as we know.

Leiann

Monday, August 29, 2005 8:00 PM CDT

Today was the first day of 2nd grade for James. He must have told me five times tonight that "today was a blast!" I was able to talk with his new teacher a little about his reading trouble and issues with his treatment during school. I get the feeling that it is going to be a good year.

Sunday, James had the privilege of attending a golf outing in Crown Point. A friend in the office where I work does this golf outing every year with her family in honor of a nephew that died of cancer. They donate the money to Make-A-Wish. This year, they decided to donate in honor of James. So, we took James to the outing and he got to ride around on the golf cart and say hi to all the golfers. It was so impressive to see how many people came just to help out the kids.

After an hour on the cart, James was really wiped out. I tend to forget that he has a hard time regulating his body temperature. He felt bad the rest of the day, but is doing fine today.

Thank you, Karla, for making the outing this year in honor of James. That really means a lot. Thanks for taking him all around on the cart. He really did like it. And thank you to all the golfers and donators for making James' wish possible, as well as the wishes of other children. James wish is to go to Disney World. We will be going some time in February - right about the time that we are sick of the snow and cold up here.

James' next MRI is September 8th. We are anxious, of course, to see more shrinkage, but realistic in remembering that he was off treatment for six weeks with the line infection. Please continue to pray for James - that his tumor will shrink, his sight will remain stable (Praise the Lord the last eye test was good), and that 2nd grade will go smoothly.

Please sign the guestbook and let us know that you are praying. That means a lot to us.

Leiann

Tuesday, August 23, 2005 12:44 AM CDT

Just wanted to let everyone know that James is doing great. He is back on treatment and, as of yesterday, he reached the dose of 150/25, which is considered his top dose - and higher than he has ever been.

School starts this next Monday and James is very excited. He has done well this summer with staying awake for a whole day, so I think 2nd grade will go better than 1st. His next MRI will be September 8th.

Thank you so much for your prayers,

Leiann

Sunday, July 31, 2005 10:14 PM CDT

James' blood counts looked better today. WBCs went up to 4.9 and hemoglobin went up to 9.8. Not great numbers, but getting better. So, he is back on treatment. Please continue to pray with us that these labs will stabilize and, of course, that James' tumor will go away and his sight be saved. James does seem to have a harder time reading. It could be that, since he doesn't like it, he just doesn't practice much. But it could be that his sight is getting worse. I believe his next test is in September.

Thanks,

Leiann

Saturday, July 30, 2005 9:26 PM CDT

Well, more bumps in the road! Ever since James' infection, his WBCs and hemoglobin seem to keep dropping - which is what they did again today. WBCs are down to 4 (not that bad, but not going in the right direction) and hemoglobin is 8.9 (not good at all). So, he is off treatment again for today until we see what things look like in the morning. We ran blood cultures this week in order to check for infection again, but so far they are negative. Please pray that if there is a problem that is being missed, the doctors will find it. Otherwise, that his blood counts will stabilize and we can get him back on treatment in a more consistent manner.

Thanks,

Leiann

Wednesday, July 27, 2005 12:05 AM CDT

James is up to 125/15! In case you don't understand what that means, I will explain. James gets two types of medicine that are given by pump. One, called A10, he gets 125 cc every four hours. The other, called AS2-1, he gets 15 cc every four hours. So, we call his dose 125/15. James had remained steady at 120/15 for many months, before having to be off for a while with a line infection. Now that he is back on and steady, we are wanting to try to go up a little more. We are determined to see this tumor really start to shrink.

Your prayers for James, and our family, are greatly apreciated.

Leiann

Monday, July 25, 2005 9:42 PM CDT

James is back on treatment and doing well. We reached his old dose on Saturday. Hopefully, we will try continuing up for a higher dose this week.

We had a little scare on Sunday when the tubing that was placed in the OR broke while in church. We caught it before the blood got everywhere. Thankfully, it was in a place that we could clamp it off and then change the needle once we got home. Never a dull moment!

Thank you so much for your prayers. They do mean so much to us. The other day I was talking with someone about the surgery that our third son had when he was born (transposition of the great arteries, which is open-heart surgery). Most kids that have had this condition, although saved by the surgery, grow up with many problems as a result. You would never know Josh ever had a problem, except that he is a little small and doesn't run long distances well. Then I thought, it is the same with James. Most kids, 6 1/2 years after being diagnosed with a brain tumor, are not as healthy or smart (if I say so myself) as James is.

GOD REALLY IS GOOD TO US!!!!

Wednesday, July 13, 2005 10:59 AM CDT

Well, the line didn't get to stay. The infection was still there, so the line was removed on Saturday. We will have another one placed next week, Tuesday or Wednesday. Otherwise, James is doing well. He is enjoying camp this week and getting to swim everyday.

I will keep you posted on his surgery date. Thanks so much for all your prayers. Don't forget to sign the guestbook and let us know who is visiting and praying.

Leiann

UPDATE - 07/14

James surgery is set for Monday morning, 07/18. The site where James last port was removed is looking pretty "rough." I am guessing it wasn't an easy procedure to get the old one out. Pray that it will heal well before Monday, just in case the next port needs to go in the same side.

Leiann

UPDATE - 07/18/05

James' surgery was bumped from Monday to, hopefully, Tuesday. I will keep you posted. His old port site is looking much better. Thanks for praying. One extra day to heal certainly couldn't hurt.

Leiann

UPDATE - 07/19

James' port placement went very well. THANK YOU FOR ALL YOUR PRAYERS! He is quite sore, as they needed to access through this neck this time. But he is doing well. The next step is to get him back on treatment. Pray that it will go smoothly. Thanks.

Leiann

Wednesday, July 6, 2005 6:16 PM CDT

It was a good day!! James has finished the antibiotics and had his first culture yesterday - which is thus far negative. Friday we will do another culture. Keep praying that everything remains negative so that we can keep the port.

James MRI report reads that the tumor is stable compared to the last MRI. That is not unusual when dealing with a low grade tumor and comparing from MRI to MRI. When you look back to last years MRI, you can really see the difference. I will send the disk off to Houston and see what they have to say about it.

Thanks for all your prayers.

Leiann

Saturday, July 2, 2005 9:00 PM CDT

James is finally back on treatment. He started a little slower, but will be back to his old dose by Monday - if all goes well. We will have appointments on Wednesday - one with infectious disease to make sure we can keep the port and one with his oncologist to see what the MRI from last week says. Thanks for all your prayers.

Leiann

Thursday, June 16, 2005 10:01 AM CDT

James is in the hospital with what appears to be a shunt malfunction. Started with a pretty bad headache on Tuesday that will not go away. They gave him morphine in the ER, which made him sick. Then he became dehydrated and spiked a fever. He is doing better now, but still with the bad headache. He will go into surgery soon. I will keep you posted. Thanks for your prayers!

Leiann

UPDATE - 12:45 P.M.

James' blood cultures came back positive, so the surgery was cancelled for now. More blood cultures were sent to confirm an infection. We will wait to see what those say and go from there. In the meantime, he will be started on antibiotics. Thanks again for all you prayers.

UPDATE - 06/17

James is doing much better. The surgery for the shunt revision is definitely out. The surgeon has also decided to leave James' port in place for now and see if the infection clears up. Hopefully we will be heading home soon, even if we do IV antibiotics at home. Thanks for your prayers.

UPDATE - 06/19

Well, we almost got home. About 30 minutes before we would walk out the door, James' cultures came back positive. He is scheduled for surgery to remove the port tomorrow, but surgery still wants to wait. We will all discuss it again in the morning. Otherwise, James is feeling fine. In fact, he feels so good he is getting stir crazy in the hospital. For everyone's sake, I hope we get home soon. Your prayers are GREATLY appreciated.

Leiann

UPDATE - 06/21

WE ARE FINALLY HOME! The cultures have remained negative since Sunday, so the ID doctor let us go home with IV antibiotics. He will continue these for ten days and then we will run blood cultures again. Please pray that everything remains negative. Having to remove this port and replace it would be difficult, as James has limited access sites available. Thanks again for all your prayers. They mean so much to us.

Leiann

Monday, May 2, 2005 9:57 AM CDT

James had his MRI on April 20th and it went very well. Everyone agreed that it looks about the same as the last MRI. Not such bad news, but "smaller" would have been nice. Then we made a quick overnight trip to Texas for follow-up with Dr. Burzynski. It was good to see all our friends and to get a chance to meet Paul Leveritt. We also had the opportunity to talk with the radiologist there. Although the tumor is the same as the last MRI (which is very common with slow growing gliomas), when you compare it to last year's MRI, you can plainly see the changes. It is approximately (I'm sure this number could be argued) 50ess dense. That means there is not as much tumor activity in the tumor. That was exciting to hear! So, we continue on. James feels great. Dr. Burzynski is happy with his dose, since it appears to be working. He will have another MRI in June. THANKS FOR ALL YOUR PRAYERS!!!

Dave and Leiann

Saturday, March 12, 2005 8:49 PM CST

Posting the new pictures of James has caused me to think about our "brain tumor journey." Never did I realize when James was diagnosed in December of 1998 that we would still be dealing with a tumor in 2005. But, I cannot say that I am "sorry." Without James' tumor, we would never have seen God's hand work in the way it has. We would never have been forced to pray for the things we have prayed for and then seen God answer those prayers. Now, as other things come into our lives, we have confidence that God will take care of us because we can remember what He has already done. It reminds me of a verse in Psalms 34:8 that says, "O taste and see that the Lord is good: blessed is the man that trusteth in him."

My biggest fear is that, because God has been so good and James is doing so well, people will forget to pray. PLEASE pray with us that God will be with James in this new treatment. That if it is His will, James will someday be tumor-free. That God will spare his sight and even allow it to improve.

James is really doing well on the treatment. His next MRI is scheduled for April 20th and then we will make another overnight trip to Texas on the 21st. We just heard from the National Children's Cancer Society (who has been so helpful with our trips to Texas), that their funding is low and they will not be able to help anymore. Although we are disappointed, we are so thankful for all they have done for us. We are confident that God will provide in other ways.

Thanks again for all your prayers. Don't forget to sign the guestbook. It is a great encouragement to us to know that others are praying for James and our family and that we have not been forgotten.

Love and prayers,

Leiann

Saturday, March 12, 2005 8:49 PM CST

Posting the new pictures of James and caused me to think about our "brain tumor journey." Never did I realize when James was diagnosed in December of 1998 that we would still be dealing with a tumor in 2005. But, I cannot say that I am "sorry." Without James' tumor, we would never have seen God's hand work in the way it has. We would never have been forced to pray for the things we have prayed for and then seen God answer those prayers. Now, as other things come into our lives, we have confidence that God will take care of us because we can remember what He has already done. It reminds me of a verse in Psalms 34:8 that says, "O taste and see that the Lord is good: blessed is the man that trusteth in him."

My biggest fear is that, because God has been so good and James is doing so well, people will forget to pray. PLEASE pray with us that God will be with James in this new treatment. That if it is His will, James will someday be tumor-free. That God will spare his sight and even allow it to improve.

James is really doing well on the treatment. His next MRI is scheduled for April 20th and then we will make another overnight trip to Texas on the 21st. We just heard from the National Children's Cancer Society (who has been so helpful with our trips to Texas), that their funding is low and they will not be able to help anymore. Although we are disappointed, we are so thankful for all they have done for us. We are confident that God will provide in other ways.

Thanks again for all your prayers. Don't forget to sign the guestbook. It is a great encouragement to us to know that others are praying for James and our family and that we have not been forgotten.

Love and prayers,

Leiann

Wednesday, February 23, 2005 1:03 AM CST

James saw Dr. Goldman, his oncologist, yesterday and we had the opportunity to sit down and look at his last MRI scan of January 19th. When I had sent a copy of the scan to Texas, the doctors there felt that the tumor was the same. So, I was a little discouraged and thinking I had "jumped the gun" on reporting good news.

But Dr. Goldman was very happy about James' condition. He is thoroughly amazed at how well he is doing. He is a happy, healthy 7 year old. When we reviewed the scan, I told him that the doctors in Texas felt the tumor was unchanged. He said, "The tumor may very well be the same size, but it is definitely less intense." He said that with a smile.

Thank you so much for all you prayers. Please sign our guest book so that we know you have stopped in and check out the new pictures that I posted.

Leiann

Wednesday, January 26, 2005 11:50 AM CST

PRAISE THE LORD!!! We just received the written report from James' MRI on January 19th, which says "slight decrease versus no change." Although this may seem like not-so-good news, all the other MRIs plainly said "no change." So, the slight decrease is very encouraging to us. It means that there is DEFINITELY no growth and, prayerfully, it is heading the right direction. With this in mind, and of course looking at several years on this treatment in order to fully get rid of the tumor, we have begun to look at ideas to help raise funds to pay James' mounting medical expenses. An account will be set up soon by James' aunt. If anyone is interested in helping, we will post the information as soon as it is ready.

THANK YOU SO MUCH FOR YOUR PRAYERS! We are very excited and continue to pray that someday James will not have a tumor, that God will protect the sight that he has, and possibly that some of the sight lost will return. Please pray with us.

Dave and Leiann Neubauer

Monday, January 3, 2005 8:18 PM CST

Just got back from a trip to Minnesota to visit grandpa and grandma. Boy, was it cold up there. The kids always love going to visit them. James is doing great on his medicine. His next MRI will be on January 19th and we are anxious. He is just beginning to struggle in school. Spelling and reading seem to be the hardest. It could be in part due to his eye sight, but some tell me it is because of the hydrocephalus that he had as a baby and that spelling and reading will always be hard.

James and his brothers and sister had a wonderful Christmas. Thank you Aunt Lisa for everything. You always know how to make our Christmas special. The kids love all the things you got them. We went to Children's on Christmas Day to give gifts to 3 West. That is something we have done every Christmas since we spent Christmas there ourselves. We met some very special families that were having to spend Christmas in the hospital. I do pray we were a blessing to them. It is definitely a blessing to us to go there.

Keep James in your prayers for his next MRI.

Leiann

Sunday, November 21, 2004 9:14 PM CST

Sorry to not have updated for quite some time. Our trip to Texas was wonderful. It was quick, but we really had a good time meeting little Gussie and his family. James has done wonderfully for the last two months. Not a single problem. I was a little discouraged about the last MRI. Not that it had bad news, but I am anxious to hear "smaller." It was encouraging to hear from another antineoplaston patient's mom that it was more than 6 months before they saw any results and then it was slow. She mentioned that when necrosis was seen on an MRI, that area was usually gone soon. To me, that is good news since James has necrosis in his tumor. We pray that the next MRI shows some gone. Wouldn't that be great?!?!!! With everything going so smoothly, we are really looking forward to a nice Thanksgiving and Christmas. Feel free to sign our guestbook as we love to hear from everyone.

Love and prayers,
Leiann

Tuesday, October 19, 2004 11:04 AM CDT

James MRI day was a little chaotic, but overall went well. We still struggle with the port. It seems to be more traumatic for James each time we try to access it. We will meet with the surgeon on November 8th to talk about changing it to a Hickman. Dr. Goldman says the tumor looks stable on the MRI. I would have loved to hear "smaller," but I know that it is still early. His last vision test, Friday, showed the vision to be the same. Thank you for praying with us that it would not get worse. We continue to pray for James' vision and that this tumor will begin to shrink. He has been doing great on the treatment for the last two months. No sickness at all. One day of low potassium, but we bumped it right back up. We will have an overnight trip to Texas on the 29th. We are really looking forward to it as we will get to meet little Gus and his family from France and England. We will let you know how things go when we get back.

Saturday, September 18, 2004 2:55 PM CDT

This last week has gone very well for James. We have increased his medicine very slowly and he seems to feel fine. His hemoglobin has remained stable and we have kept his potassium up without the supplements, just with diet. He is feeling MUCH BETTER!!

James went for an eye test on Friday. I thought it had gone well. It seemed that he did much better on it. We even saw Dr. Goldman in the hall and I commented on how well his eye test went and I thought maybe his eyes were improving. BUT, Dr. Goldman called us that evening to tell us that wasn't the case. James eye sight is worse. We have known that he has only peripheral vision in his left eye with a "black spot" in the middle, but the right eye has been good with 20/30 vision. They say James right eye now has a "black spot." I did not get a chance to talk much with Dr. Goldman about it. We will find out more on Wednesday when we go to see him.

This gives us renewed vigor to plunge ahead with this treatment and try to get this tumor to shrink as quickly as possible. By what I understand, the faster we can get this tumor to shrink, the more of James' sight we will salvage.

Please pray with us that the treatment will work (and quickly) and that James will not lose any further vision.

Love,

The Neubauers

Friday, September 10, 2004 11:24 PM CDT

Sorry it's been so long since I updated. Things seemed to go fast after we returned from Texas.

Most of James' trouble was from a pleural effusion he had in his lungs. His hemoglobin had also dropped to 7.3. He was in the hospital overnight and they gave him blood. He was off treatment for about 2 weeks until everything resolved.

Last Wednesday, we took him for more tests and everything was clear. He started back on his treatment yesterday, at a very low dose. We have decided to start very slowly, so hopefully things will go smoother. We are also trying to have him eat more potassium-rich foods and get him off all the medication he was on. This was really irritating his stomach.

He is doing good in school. Today, his second day back on treatment, he slept for two hours of the school day. We thank the Lord that he is able to attend such a wonderful school and has a wonderful teacher. She has been very understanding and helpful with James. We will try an earlier bedtime and see if that helps.

His first blood work came back since being back on treatment and everything looked wonderful. Sodium and potassium are fine (even with no potassium supplements, only trying to get him to eat more potassium-rich foods). His hemoglobin is staying up. Liver functions look great. Two days on -- SO FAR, SO GOOD.

Last Wednesday, I was reminded again of what a wonderful doctor James has in Chicago. He has been there for James for almost six years now and has never let us down. When we were talking with him Wednesday, James jumped up and gave him a big hug. If I didn't think it too bold, I probably would have gave him one myself. We thank God that He has given us Dr. Goldman.

James next MRI will be in September. This will be five months on this treatment. I think it will still be too early to see much results, especially with our breaks. One day when James was on his first course of chemo, Dr. Goldman called me to give me his MRI results. I jokingly said, "I thought you were going to tell me the tumor is gone." He said to me, "I think I will tell you that someday." We are looking and praying for that everyday.

Thanks for all the prayers for James and our family.

Love,

The Neubauers

Friday, September 10, 2004 11:24 PM CDT

Saturday, August 28, 2004 12:54 AM CDT

We really had a good time on our trip to Texas, but I think we tried to fit too much in.

We went to the Illinois State Fair first. The kids really liked that. They had never been to a state fair. Thank you Aunt Lisa for letting us come on such short notice. I hope we weren't too much trouble.

Then we visited the St. Louis Archway. That was really exciting. Thank you, Stacia, for having lunch with us. You cannot know how much that meant to us.

The stay in Texas was short, but very nice. What a wonderful apartment Mrs. Burzynski arranged for us. I could not have asked for anything better. Thank you, Keith and Susan, for spending the day with us. We really enjoyed the time we spent with you. I hope we didn't wear you out too much.

We went to the Houston Space Center. It was very, very interesting, but I will say that by that day we were all really tired.

James' appointment went well. Things are going well for the overall picture, but each day he still struggles with not feeling well. After we got back, he seemed to have more trouble with new symptoms like chest pains and more headaches, not realy resolving when we stopped the treatment. So, this last Friday we spent the day in Chicago having several tests done to see if his shunts are what is causing the trouble. We won't know any results until next week.

The kids will start school on Monday. James isn't really excited because he hasn't felt good. He doesn't think he will make it through the day. I told him we will just take one day at a time and see how it goes.

Friday, August 13, 2004 6:56 PM CDT

We are all getting excited about our Texas trip on Monday. We will stop at Aunt Lisa's house first. They always love Aunt Lisa's house. Then we are going to visit the Gateway Arch in St. Louis on Tuesday and have lunch with Stacia Wagner, our friend from the National Children's Cancer Society. We'll stay overnight in Oklahoma and then arrive in Texas on Wednesday. Mrs. Burzynski has graciously offered us an apartment to stay in while we are there. She is such a sweetheart. James will see the doctors on Thursday and then we will have dinner with Keith and Susan that night. They are friends we met on our first trip. Before we head home, we are hoping to go to the NASA Space Center. Then we'll get home on Saturday night.

James has been doing well this week. After being off the treatment for two days, the doctor has separated his medicines, trying to nail down why he has been getting sick. He did well on just the A10, and now is doing fine on both. I think James just enjoys keeping us confused. Let's hope it all settles down before school starts. I can't believe James is going to be in 1st grade.

Pray that we have a safe trip and we will update everyone when we get back.

Wednesday, August 4, 2004 3:14 PM CDT

James' first MRI after starting antineoplastons showed that the tumor is stable and there are areas of "necrosis." I think that means they are dying. We will definitely be anxious to see what the next one shows.

Friday, July 23, 2004 3:22 PM CDT

James was diagnosed with an optic pathway glioma in December of 1998 when he was 11 months old. After having shunts placed for hydrocephalus, he began chemo in January with carboplatin/vincristine. He did well on this with approximately 80hrinkage of the tumor by the time it was completed. We honestly believed that what was left was just dead tissue.

But we soon learned that that is not usually the case. James' tumor remained stable for two years, but then began to grow again. At this point, we started him on a Phage II clinical trial of vinblastine. This succeeded in keeping the tumor from growing anymore, but it did not shrink it at all. James finished that chemo on New Year's Eve of 2003. We had a big party!! Aunt Lisa came to be with us on our last chemo day and brought James a two-wheel bicycle, which he had really been wanting.

The first MRI after finishing chemo showed possible growth and the second showed definitely that the tumor was growing again. That is when his doctor recommended radiation. Althoug we have always loved and respected Dr. Goldman, as we still do, we were not ready to try radiation.

So in searching and studying, we decided to try a treatment called antineoplastons at a clinic in Houston, Texas, The Burzynski Institute. He has been on antineoplastons for three months now.

We were gone to Texas for the entire month of May to get James started. Getting started was a little rough, but he is adjusting well. He carries around his backpack like a little trooper (which holds a pump and the medicine which is infusing 24 hours a day). We will be going back for a check up on August 19th. Then James starts 1st grade on August 30th.

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