GOD IS SO GOOD!

Sending out the Gospel in honor of James' birthday

2011-01-29T13:44:00.001-08:00

We took 13 balloons with tracts in them to release at James'

grave, to celebrate his 13th birthday.

13 red and white balloons, each with a tract that told

who James was and who James loved, the Lord

My niece, Brittney. This was her idea.

We asked God to take the balloons to

people that needed the gospel

Happy Birthday, James

2011-01-29T08:13:00.000-08:00

James' birthday party was PERFECT,

thanks to the many friends that gave to make it happen.

It was truly a reflection of James' spirit.

Ron, the magician,

(www.mybirthdaypartymagician.com/charlottemagician.htm),

did an awesome show for the kids.

He had all the kids laughing, especially when

his rabbit, Stew, wouldn't cooperate.

Mr. Bower, James' SS teacher,

and Jon played "J-A-M-E-S" bingo with the kids

and it was really a hit. I think we could have played all night!

The number "M-19" kept coming up over and over,

so Jon threw it out.....literally!

Josh and Justin and Landon did the prize table for the game.

Angel, from Children's Party Plus

(www.childrenspartyplus.com),

came to do face painting for us.

Mrs. Bower and Kelli and Johannah served the cake and ice cream.

I'm not sure how much help Mrs. Bower is getting from these two :)

Haines Barksdale (and Isabel) from For Goodness Cakes

(http://forgoodnesscakes.blogspot.com)

made an awesome chocolate chip cake for us.

THANK YOU, EVERYONE, FOR MAKING

JAMES' BIRTHDAY A SPECIAL DAY!!!!

Happy Birthday FROM James

2011-01-19T08:52:00.000-08:00

Although losing James has definitely been the hardest thing we have ever done, when we thought of his upcoming birthday, we knew that we wanted to do something that would be honoring of James. Anyone that knew James knew that he loved EVERYONE and he loved giving. So that's what we want to do on James' birthday......give.

We decided to have a birthday party at the local children's home. We are calling it, "Happy Birthday FROM James." We have a magician that is donating a show for the kids (Ron the Magician). A cake decorator is donating a cake (For Goodness Cakes). We even have a face painter coming (Childrens Party Plus ). We're going to have cake and ice cream, lots of balloons, and a ton of fun!!!

When talking to the director at the home, she recommended that we make gift boxes for each of the cottages. There are 4 cottages that house 6 kids each. Since Christmas is just passed, she felt it would be best to give things that the groups can use together rather than individual gifts. So we are putting together birthday boxes full of videos, games, and crafts for each cottage.

We could use your help to fill these boxes. Jon has the paypal set up on James' website (www.JamesNeubauer.com) so that you can easily donate.

Colorado

2010-12-30T09:27:00.000-08:00

I had the opportunity to go to Colorado this week and visit Griffin and his family. I cannot tell you how thankful I am for that. It was just what I needed. The Bohans are an amazing family. The nurse that was there for the day told Shawna that she was sticking around so long because she was amazed, she saw such love in that home....and she was right!!!! I got to play Gassy Gus with them all (G if very good at it), played Candy Land with Jamison, and made friendship bracelets with Holland (now there is a sweet little girl!!!).

Griffin only has a short time here, but it will be filled with love....

his whole house is filled with it!

I also had the opportunity to visit with my brother,

Corey, and sister, Kelly, who I rarely get to see.

Kelly and Corey

Leiann, Kelly, and Corey

This is Corey's beautiful family. Lora, his wife, is absolutely amazing. She works with Corey, who has an acupuncture clinic, homeschools the kids, babysits a million little ones (okay, maybe it just seemed like a million), and has her own natural make up business (Willowtree Minerals), born out of necessity because she was allergic to all other make ups.....and then she always has that amazing smile on.

Corey, you found a winner!!!

This is Jaken

This is Lane

This is Bo Jin (the human vacuum)

This is Jesse

I had so much fun spending time with these boys!!!!!

THANK YOU, Griffin, for making this trip possible.

THE NEUBAUERS LOVE YOU A LOT!!!!

Celebration of James' life

2010-12-24T21:18:00.001-08:00

Pastor Clark giving testimony.

Matt and Carilyn Raymond singing "Cherish the Moments"

Mr. Bower, James' Sunday School teacher, giving testimony.

James really loved Mr. Bower.

Mrs. Olinick singing "Jesus Loves the Little Children"

Aunt Laura giving testimony

Cheryl Thaxton from Duke Pediatric Quality of Life

Cheryl walked the last two months of James' life with us EVERYDAY!

Thank you, Cheryl!!!

Pastor Edwards

James' best friend, Landon

Josh, Jon, Joe

Grandpa Fisk, Aunt Laura, Leiann, Aunt Lisa, and Aunt Patricia

Forever in Our Hearts

2010-12-16T13:33:00.001-08:00

This update is DEFINITELY overdue, but losing James was the hardest thing we have done in our lives.

James passed away on November 21st, just 15 hours after arriving home from Duke. I never realized how thankful I'd be that we brought James home. I worried that we wouldn't like that he would pass away in our house. But we LOVE that we got to just sit with him and be with him during his last moments....and we didn't have to share them with anyone!! Thank you, Lord, for knowing what we needed even more than we did.

James' funeral was on November 29th and it was a beautiful celebration of the wonderful life that he lead.

We will always miss him.....but we will always be thankful for the privilege to have had him in our family, an example of what we all should be!!!!

Moving forward???

2010-11-02T09:56:00.000-07:00

James was off the BiPAP for 2 hours twice yesterday and gets to be off for 4 hours at a time today. He looks so much more comfortable without it on. He opens his eyes when we talk to him. He doesn't talk to us yet, but I am praying for the day he will. I dreamed last night that I walked into his hospital room and said Hi to him and he said Hi back. Only God knows if that was just a Mom's wishful dream or an indication of what God is going to do. I am going to trust that He knows best and praise Him for every small step forward that we get.

Jonathan and I were just talking yesterday about the struggle it's been to get the neurosurgeons to talk about treating James' tumor. Although we understand that James still hasn't responded enough yet to know for sure if we should treat the tumor, we worried that the conversation, if we get there, will be a battle. But......SURPRISE! James' neurosurgeon came in this morning and told us that he is setting up an appointment with the radiation oncologist in plans of starting radiation next week. We will meet with her tomorrow. I think there is still some questions....and this week will answer those questions....but the ball is rolling, PRAISE THE LORD!!

I continue to ask God to make James well...or take him Home....and that I will have the wisdom to know which way is right. Our #1 goal is to make sure James doesn't just suffer. But we are encouraged by all that God has done in the last 2 weeks!!!

Extubated!!!!

2010-10-31T06:07:00.000-07:00

James was extubated (breathing tube taken out) this morning about 6 a.m. and is doing very well. They lowered some of his medication to try to help him wake up more. He has to wear a BiPAP mask for now to ensure that he's breathing adequately on his own.

We've wondered for a week or so now whether James' movements are truly purposeful or whether they are just reflexive. The answer to that would make a huge difference in the decision on which road to go down next. But this morning, with the BiPAP mask on (by the way, James has ALWAYS hated any sort of mask covering his face), James started fussing and we went to talk to him and reassure him and we noticed that James was actually crying...clearly not happy about the mask. Seems terrible to be excited about crying, but crying is clearly not reflexive.

Over the years of dealing with James' brain tumor, we have known many families who dealt with end-of-life issues, some with an amazing grace from God. I often thought I could never do that. But over the last month I have begun to understand why they chose what they did. There comes a point where it ceases to be about how much you will miss your child and it starts to become how much you are willing to let them suffer. As we've watched James storm over the last 3 weeks, we realized that we don't want him to have to do that forever. Although our hearts would hurt more than we could ever know, we don't want him to survive only to be in much pain or to endure surgery after surgery. So it is our prayer that God will make James well (not perfect, but not suffering) or take him Home.

Having said that, we are encouraged by how James is doing. God hasn't taken James Home yet and we have to believe that there is a reason. James continues to amaze the doctors. Now that he has the breathing tube out, the next step is to help James wake up and assess where we think he is. That is the fork in the road that will determine whether we move forward with treating the tumor or not. We are praying for God's wisdom.

Loving James' Pet

2010-10-26T08:26:00.000-07:00

Coco is James' sweet dog that he's had for a couple years, since a puppy. Jonathan found an easier way for people to help with James' pets. On the website (jamesneubauer.com) there is a donate button that can accommodate paypal or credit cards. This will go directly into the James Neubauer Medical Fund Paypal and then can be used to pay the kennel bill. We've printed some bones and paw prints that we will put the names of those that have loved James' pets for him and hang them all on his wall. We'll post a picture when we get them up.

James and Coco in 2007

Praying

2010-10-17T07:03:00.000-07:00

James has a lot of doctors (very good doctors) on board who are all working very hard to help him get well. But we know that James' greatest help will come from the Lord. So I wanted to update and keep everyone praying James through these next few days.

First, there is a new PICU attending doctor on for the weekend and she is very aggressive in trying to move James forward and closer to getting the ventilator removed. I like that....but at the same time I'm afraid. Her name is Dr. Ozment and I'm praying that she will have God's wisdom this weekend.

Dr. Ozment's first job this weekend has been to get James switched from narcotic medications for controlling his storms to other medications that will not suppress his breathing. If they can do this without him storming too much, then he will be one step closer to getting the breathing tube out. Yesterday, they weaned one of the medications to almost nothing and James did well. I walked in on a storm this morning, but evidently it was the first one so far. Today will be another day of weaning the narcotics, with the hope of being switched by sometime tomorrow. Pray for wisdom as they make this switch and subsequently control the storming episodes.

James chest x-ray looked better last night, but then worse again this morning. They are going to be more aggressive in trying to get those lungs cleared up today. Again, praying for wisdom and safety.

Due to the steroids that James is on, he has high blood sugar now. They will start insulin to keep it under control.

Finally, James' shunts are still not working right. It is routine when the shunts are draining outside the head that they change the tubing and catheters weekly, to avoid infection. It is the plan, I believe, to take James back to the operating room tomorrow to change those catheters and hopefully find a better placement. Of course, I worry about every surgery that James will need and I'm not sure how this will affect the efforts to get him off the breathing tube.

As you can see, each problem is so intricately intertwined with the next. In fixing one thing another will go wrong and to fix that one messes up something else. GOD knows what James needs....He knows how to untangle the mess....and He knows what is best for James. We are praying hard for His will to be done and for Him to be near to James. Thank you for praying with us!!!

A new chapter

2010-10-16T06:41:00.000-07:00

Our life lately is like that chapter you reach in a book when everything changes and you say, "No way!!! I never expected that!!

Two weeks ago, James was once again airlifted to Duke for a shunt revision. We were not surprised when he did not wake right away from the surgery as that had been his pattern for all the shunt revisions he's had this last summer. In fact, it actually seemed like he was waking a little better than the last revision. But the new turn came when he started having what is called "autonomic storming" or "hypothalamic storming."

If I understand it right, this storming is caused when the hypothalamus (which is the area of the brain that James' tumor is in) becomes damaged. This is the area of the brain that controls our hormones. With this damage, James' hypothalamus is dumping large amounts of adrenaline into his system. So these storms, although somewhat similar looking to a seizure, are actually huge adrenaline rushes. With each storming episode, James' blood pressure shoots up very high, his heart rate triples, he hyperventilates, and his muscles tense so hard that they could actually tear. They seem to be triggered by stimulation or agitation. Autonomic storming is not a common thing and so there is not a lot known about it or how to best treat it. It's still trial and error.

In an effort to rule out seizures as the cause, James underwent an EEG last week. Due to the stimulation, James ended up storming for the entire procedure - 45 minutes long. That was more than his body could handle and he ended up "crashing," with his blood pressure dropping quickly. He was coded and eventually needed intubated to protect his airway. The doctors were not sure that James, at that time, would even survive an intubation and asked us to tell him good-bye. Talk about catching me off guard!!!!! Although I've always known that I might have to do that someday, I never suspected it would be now. My heart was broken!!!!!!!

James pulled through that night and continues to fight. It has been a challenge over the last week to try to get him off the breathing tube (to clarify, he breathes on his own, but needs the help to expand the lungs enough to keep them healthy) and still control the storms at the same time.

To add to the mix, one of James' blood cultures from several days ago started growing something, so he now is being treated with 3 antibiotics. Let's see.......we have a PICU doctor, neurosurgeon, neurologist, endocrinologist, infectious disease doctor, and radiation oncologist. That is a lot of cooks in the kitchen!!! It was decided that a meeting was needed with everyone involved in James' care, in order to make sure that everyone knew what the other was doing and that everyone had the same goal in mind for James.

Yesterday was that meeting and I feel that it went very well. It started with an opportunity for me to tell everyone who James really is and what he means to us. I shared how friendly and how smilely James is....but more than anything, I shared how brave he is and that several months ago we (his family) promised him that we would fight with him no matter what. I wanted them to know that we intend to keep that promise to James. Fighting didn't mean that we were just going to let James have these storms forever, but it meant that we weren't calling it quits until James indicated that he was ready to call it quits. I don't know how he will do that, but I don't think it is now.

The thing that makes James' care so complicated is that each problem is intertwined with other problems. There's no way to just say, "Step 1, Step 2, Step 3......" We laid out a plan and expectations, but not a one of them will be easy. The plan for the weekend is to adjust his sedation medications to the point that he could be safely extubated. His chest x-ray showed that his lungs are a little sicker today than yesterday and that needs to improve before extubating also. At the same time, neurosurgery is working to get the ventricle (the right in particular) to decrease in size, as it has still been enlarged since the last surgery. The right catheter was adjusted yesterday and the drainage seems much better, so they are doing a CT scan today to see if the ventricle is coming down. It's possible that the decrease of this ventricle will help the storming episodes, since the increase in the ventricles always made it worse.

We're asking everyone to pray for wisdom for us and the doctors, for strength for James, and for God's will to be done. We are so encouraged by the love and prayers of everyone. I put the cards that have been sent to James all over his room.

The view from James' pillow.....can't wait til he wakes up and sees how much he is loved.

Slow but steady

2010-09-22T21:02:00.000-07:00

It's been a while since I updated, I'm sorry. Life has definitely taken a new turn since James' last surgery and it keeps us all VERY busy.

James has not needed any further shunt revisions - PRAISE THE LORD!! We continue to pray that he does not need any other surgeries.

He had a CT scan last week to check on the ventricles (which look fine) and it also said that the tumor is stable. Of course, we won't have another MRI done to show officially the size of the tumor until the end of October. But we continue to pray for stability, or even better, shrinkage of this tumor.

We have look at other options for James, should they be needed. Records are being sent to Boston to see if James is a candidate for proton beam radiation. But in the meantime, we continue on everything that has given us the most recent stability.

As far as James' recovery for all the surgeries this summer, it is slow. He is still unstable when walking and needs assistance. He still talks slowly. He goes to physical therapy twice a week and we have started to take him to the Y to further help him build strength. We are looking at options of websites that will offer him a work out in thinking skills, but we need to find him another laptop, as all of ours went down this summer.

More than anything, we pray that God will intervene on James' behalf. We believe that God can do what nothing else has and we are asking Him for that.

Here are some pictures of our recent trip to Georgia to attend Joseph's graduation from boot camp at Fort Benning. James really enjoyed seeing all the soldiers.

The guys in Joe's platoon signed this shirt for James.

So far.....so good

2010-08-30T16:46:00.000-07:00

Well, we've been home 9 days. That might be a record. Although we still feel like James' condition is "touch-n-go," he's doing fairly well. PLEASE continue to pray that there will be no more shunt revisions.

We will be going to Duke tomorrow to get the stitches out and have another CT to check on the ventricles.

Today, he started physical therapy. It doesn't take much at all to absolutely wipe him out. He exercised on the machines and played on the Wii (balance), but after about 20 minutes he just kept falling asleep on Kelli, our physical therapist. I didn't think an afternoon appointment would go well. Thankfully, we have mostly morning appointments after this.

Please continue to pray for:

James' shunts - no more surgeries
James' tumor - shrinkage
James' condition - complete recovery

I believe with all my heart that the answer for James is prayer. God can do what no one or nothing else can.

NO GROWTH!!!

2010-08-20T14:37:00.001-07:00

Because James ended up needing yet another (the third in 6 weeks) shunt revision, the doctors went ahead and did the MRI now, rather than wait until the 25th. This MRI revealed NO GROWTH since the last MRI. PRAISE THE LORD!!!!!!!!!

Now, for how James is doing. Unfortunately, three shunts revisions in 6 weeks which were all preceded by great pressure in his brain has finally taken a toll on James. He is having a lot of trouble recovering from this surgery. Definitely, everyday there is progress, but it is very, very slow.

We are earnestly praying that James will not need any other surgeries for quite a while (ever would be good too). But one thing we're going to do is be proactive with watching his shunts, hoping to catch an problems early.

Praying:
1. Complete recovery.
2. "Happy" shunts.
3. Tumor shrinkage.

Praying for a Miracle

2010-08-10T13:54:00.001-07:00

We just got a date for James' next MRI (August 25) and we are asking everyone to pray hard for the next 15 days. We need at least stability, although shrinkage would be great. If the tumor is still growing, then we will most likely have to change treatments. We are asking God to do what the medicine and doctors have not....we are asking for a miracle!!

VACATION!!

2010-07-27T12:50:00.000-07:00

Vacation.....that is not a word that has been used often by us. But about 6 months ago, Jonathan decided that he'd like to plan a Washington DC vacation for us.

As time went on and James headed into treatment for his tumor, the vacation seemed to get scaled back more and more - to the point that we even thought we'd have to cancel it. At the last minute, we managed to pull it off - albeit less than we had originally planned.

BUT, we all agree now that it was the best vacation we've had. Instead of lots of sight seeing, we spent lots of time with old friends. THAT WAS THE BEST!!!

Although we knew we'd be going during a hot time of the year, it was definitely hotter than we expected.

We traveled there on Wednesday and by the time we arrived at our hotel, James was pretty sick. The 6 hour drive was harder on him than we anticipated, so he and I stayed at the hotel and rested while the kids went to church at Heritage.

This is James sleeping on his mattress....I can't figure out how he ended up half off before morning.

Then Josh, Johannah, and I met with Helen and Carolyn for late night bowling.

On Thursday, we had lunch with the Canavans and then attended the Marine Barracks Parade at 8th and I with the Dishongs, Cormells, Hodges, and Canavans. Hint: Someone stole all the parking garages. Everywhere that Google sent us had NO parking.

On Friday, Jon and Josh headed into DC to do some sightseeing with a friend from High School while James, Johannah, and I just rested and enjoyed the pool. Then Helen and I went out together to have our hair done (that was a blast) and go to dinner. I realized the truth of the saying that true friends can not see each other for many years and yet pick up as if there was never a gap.

We had planned to drive home on Saturday night, but the heat was still so bad and James had such a hard time with just the short drive to Lottie's house for lunch. Thankfully, Lottie so kindly offered to let us stay with her overnight. We were certainly not disappointed. We had a great time visiting and the kids absolutely loved all her animals. She has two horses, a pig, a dog, and a cat.

Then we got to attend Heritage Baptist Church in Woodbridge all day Sunday, where our pastor is from. WONDERFUL CHURCH!!! Lunch at Old Country Buffet and a naptime for James at the Cormell's house.

I prayed that God would miraculously send a "cold front" for our trip home that night. Although it was certainly no blizzard, it was clearly 20 degrees cooler by the time we hit the road and we were THANKFUL. Made it home by 2 a.m. safely and James did just fine.

Once again....we know that GOD IS GOOD!!!

God is ALWAYS good!

2010-07-26T07:39:00.000-07:00

Thanks to Facebook, I am even more slack at updating James' website. I apologize for all those that aren't on Facebook, so don't get very frequent updates.

It took James a little extra time to recover from the shunt revision. As he gets older, the surgeries tend to get harder on him. But he is doing well now. We just saw the surgeon about two weeks ago. He removed the stitches and reviewed James' MRI. Although there is one ventricle that still looks slightly larger, he agrees that unless something is causing a problem, another surgery would not be the best idea for James. He was very happy with how well James is doing and how well the incision healed up. Now James just needs to get his hair back. :)

The last MRI showed growth in the tumor again. It is estimated that the tumor is about 30% bigger than when we started this treatment. The doctors have all agreed that they don't think we are dealing with the same tumor. It can only be assumed that when Dr. Wisoff took 70% of James' tumor out in 2008, and then it completely returned in 6 weeks, that what returned is not the same. Of course, James' symptoms and entire response to the treatment that he had already done for 4 years is also an indication that it is not the same. Anyone that knew James then knows that he did very well on the treatment with few complications and had 25% shrinkage of the tumor.....definitely not what we are dealing with now.

This has certainly caused us to step back and assess the decision that was made and ask God what He wants us to do. We can put James back on chemo and/or he can undergo radiation. I'm not saying that we won't have to pursue one or both of those options someday, but I don't yet have a peace about it. It is my hope that the tumor is growing because of the inconsistency of the treatment due to sodium issues and shunt related issues. The bottom line for me is that I need to be able to say, should James need to undergo chemo and/or radiation (which neither will be easy on him), that we have done everything we can for James first.

So the plan is to change our diet to a strictly healthy diet with juicing to stabilize the sodium, which would allow him to stay on the treatment more consistently, as well as aiding his body in fighting the tumor.

ABOVE ALL, to pray and ask God to turn this tumor around.....to do what the doctors and medicine cannot.

I do not have a date yet, but the next MRI should be at the end of August. At that point, IF the tumor continues to be out of control, we will definitely have to make a decision.

We appreciate EVERYONE's prayers for James. We certainly have not felt a crunch like this in James' care and life since he was diagnosed. I believed then that God wanted to show the world what He could do through James' life....and I believe it still today!!! It's easy to say "God is good," but it is our prayer that the truth of it will be seen in our lives.

Shunt Revision

2010-06-19T04:34:00.001-07:00

Last Wednesday we took James to the ER because he had been fairly unresponsive all day. Sodium had been an issue in the morning, so we thought that was the problem. But once we got to the ER, the sodium was fine, yet James was not. A CT scan revealed that James shunts were not working. We were air lifted to Duke and James went emergently into surgery to unblock the shunts. James took a little longer to bounce back because of the extent of the surgery and the emergent nature of it.

In hindsight, it's evident that the trouble James had a month ago, which included a hospital stay, was the beginning of this shunt malfunction.

We should be heading home today, sporting a new hair style (none). James will have his next MRI on July 7.

We appreciate everyone's prayers and James continues to battle this tumor.

Andre Sobel River of Life Foundation

2010-06-13T21:05:00.000-07:00

It has been just over a month since I made the decision to quit my job to care of James. I know even more than before that it was the right decision. It has been a very busy month with many ups and downs for James. He still struggles constantly with sodium, which at times causes confusion and excessive sleepiness. Keeping up with everything involved in his care is a lot of work.....BUT WELL WORTH EVERY MINUTE!!!!

One of the biggest helps during this time financially has been the Andre Sobel River of Life Foundation. I was amazed when I found this foundation as they seemed to truly understand what it was like to be the parent of a chronically ill child. And, as they mention on the website, they have helped me pay the bills so that I can focus on James' care.

THANK YOU, VALERIE, FOR YOUR BURDEN!!!!

In the Hospital

2010-05-13T18:37:00.001-07:00

James started having small seizures last night, so we brought him to the emergency room today. They have admitted him and will be doing an EEG tomorrow. They have started him on Keppra for the seizures. Barring any complications, we should be going home tomorrow. We still await word from Houston on the results of the MRI and what they think the next step should be.

Thanks for all your prayers!!!!

Update

2010-05-12T19:49:00.000-07:00

Wow!!! What a month it has been since returning from Houston. It didn't take long to realize that James' care was going to take everything I had. So rather than try to find a better job and then find someone to come in and care for James (and Johannah), I decided to quit my job to care for them and trust God to take care of the rest. I cannot tell you how thankful I am for Jon, Joe, and Josh who have grown up on the "back burner" to James' care and now are willing to step up and carry the load as I care for him. I love you guys!!!!!!

James was doing well on the treatment until last Wednesday. At that point, he seemed to be much more sleepy and confused. This continued through the rest of the week, culminating on Sunday with passing out in church. We rushed him to the hospital and they did a CT scan which didn't seem too concerning, but they really didn't have much to compare it to. His sodium was high and he seemed to be doing better, so they sent us home. James continued to do better and we kept him off the treatment until the sodium made its way back to normal range. But we decided to move his MRI to this week rather than the 24th.

MRI was today and it showed quite a bit of swelling around the tumor as well as a layer of blood that indicates that what James was dealing with last week was a bleed, either around or in the tumor. We will overnight his scan to Houston and wait for their thoughts on it and plan for moving forward safely.

James was again sleepy and a little confused this afternoon. Pray that this will resolve and that he will have the strength to continue battling this tumor and that everyone involved will have wisdom in his care. I don't think we've been this close to "fragile" since James was first diagnosed 12 years ago.

Home!!!!

2010-04-02T09:57:00.000-07:00

It was a very busy last day at the clinic last Wednesday,

but we are thankful for all that God did and so glad to be home.

James was still meeting new friends on his last day.

This is Cody, who came with his father from Canada.

Thanks for spending time with James, Cody!!!!

These are definitely the best nurses!!!

WE LOVE YOU!!!

Making buddies with the cameraman who was working for Dateline.

Mrs. Burzynski brought him a gift for his last day.....polish sausage!!

YUMMMMM!

Then we went to the research institute where the antineoplastons is made and research is done.

This is the director, Chris, who is very proud of his plant...and he has reason to be.

We were very impressed with the great effort they take to make sure there is high quality.

James and I getting ready to interview with Dateline's doctor, Dr. Nancy Snyderman.

I asked Johannah how she felt about heading home....:)

5 more day!!!

2010-03-26T21:43:00.001-07:00

There is not much new to report. James is doing well as they increase his dose everyday. No problems, PRAISE THE LORD! We just have five days until we fly home and we all can't wait. We miss Jon, Joe, and Josh a bunch and we miss our friends. Thank you, everyone, for all your prayers!!!

Monday and Tuesday

2010-03-23T15:08:00.000-07:00

Our appointments each day are going quickly, thanks to having already been trained in the past. James is doing very well with each dose increase. He is more tired, more thirsty, and needing to go to the bathroom more - but this is all to be expected on the treatment. His blood work looked great today and he's feeling okay.

Yesterday, we had the opportunity to tour the Holocaust Museum after our appointment.

This is a boxcar that was used to transport Jews to the concentration camps. As many as 200 people would be crammed into each car.

This is a fishing boat that was used to smuggle Jews to Sweden

Today, we went on a boat ride of the port of Houston. It is not the most scenic ride, but it was fun to ride on the boat. It was beautiful weather and a perfect day for it.

They had some beautiful mosaic walls. On this one, James is showing you where his tumor is.

All of our trips that we've been taking each day are things I found when googling "Free things to do in Houston." I was surprised at how many fun things there were to do for free. I think having something to do each day (as well as having Aunt B and Johannah here) have made a difference for James. He is doing so much better this time. We are praying that it continues that way!!!

Sunday

2010-03-21T19:50:00.000-07:00

We started our day with a trip to the clinic...

....then enjoyed the message from Pastor Butts at Westside Baptist Church.

James and Johannah "crashed" in the afternoon...

...before we headed back for another wonderful service. They have a superb group that plays in their orchestra. I was impressed.

First day of treatment

2010-03-19T15:06:00.000-07:00

I wish I could say that today went smoothly, but it didn't.

After meeting all the nurses in the IV room....

....it took all three, many sticks, a boat-load of tears, and a trip to the bathroom for a "let's talk about this" break. The problem is that this port is implanted quite deep and was almost impossible to access. I am certainly not looking forward to it being changed in a week.

First day of treatment.

Aunt Laura never behaves :)

This is the bed that Johannah and I share. It is a blow-up mattress with a small leak somewhere. After a few hours, you just kind of sink in like she is here. With both of us on it, it becomes quite funny. We have woken everyone with laughter in the middle of the night more than once.

Galveston

2010-03-18T17:49:00.000-07:00

We had a great day picnicing in Galveston, playing in the water, and finding shells!!!! Tomorrow James should start on treatment. We really appreciate everyone's prayers.

First Appointment

2010-03-18T07:35:00.000-07:00

This is what we did on the very first day we ever came to the clinic in 2004....took a picture on this bench.

Then we met up with lots of friends in the waiting room...

...Marilyn, who has been our "phone buddy" for 4 years...

...Catherine, who has been a HUGE help in pulling this trip together....

...and Margaret, who sends us our supplies...and who also LOVES James.

Then James met with all the doctors...

...Dr. Szymkowski first, the doctor that will follow James regularly...

... Dr. Weaver.....

....of course, Mrs. Burzynski, who is best buddies with James

(notice they are the same height now :)....

...and, finally, DR. BURZYNSKI!

Because James is older now, they let him sign his own "assent" form (Mom still signed the consent form). I thought this was so neat, signifying that he has a part in the decision making of his own treatment.

Last night we had the privilege of being a part of Westside Baptist Church. Here is James in the "Patch the Pirate" Club.

No appointments today, so we are headed to Galveston.

Leaving for Houston

2010-03-16T16:41:00.000-07:00

We left Charlotte around 11 a.m. today and headed to Houston to start James on the antineoplaston treatment. Greg Cook, a businessman from Illinois, flew us in his private plane from Charlotte to Houston. THANK YOU, MR. COOK!!!

The Raymonds came to see us off. We couldn't ask for better friends!!!

James will have his first appointment in the morning at 9:30 a.m. We appreciate your prayers as he gets started on treatment, that it will go smoothly and he will not be sick.

Love ya all!!!

Heading to Houston

2010-03-02T22:52:00.000-08:00

Many things have already gotten into place for our trip to Houston to put James back on the antineoplaston treatment. God has already answered many prayers. We have a pilot that has offered to fly us in his private jet for free. We have several offers for accommodations. The FDA has approved James going back into the clinical trial. But.....there is one more big hurdle to get over. We need a doctor here in Charlotte to agree to care for James once we come home. James' oncologist, Dr. Bryant, is willing but is needing approval from the review board of the hospital...and the review board is needing more info from Houston...and that info has been difficult to get. So, we are asking everyone to pray that it all gets taken care of in time for James to get a central line placed before our departure date of March 15th or 16th - which is the dates the pilot has set aside to fly us.

It has never ceased to amaze me at how much God has done for us and how greatly He loves us.....I'm sure this problem is not different.

Happy Birthday, James

2010-01-29T16:50:00.001-08:00

James is 12 years old today!!!!

Thank you, Lord, for every one of them!!!!

12 years ago

2009-12-15T17:38:00.000-08:00

It was this time 12 years ago that James had his first MRI and we found out the next day that he had a brain tumor. That seems like a lifetime ago!

Today, James had another MRI. This one didn't go so well. In fact, I'd say it was probably the worse one yet. With the weight gain and the swelling from the hypothyroidism, as well as the fact that he's had so many sticks that his vessels are probably worn out, getting a vein for the contrast was almost impossible. Six sticks, three nurses, one anesthesiologist borrowed from the OR, and many tears later (not to mention all the pain), they finally got the contrast in. The vessel they finally got was not a good one and James was in great pain while they pushed it in. But, since we'd already been trying for an hour to even get a vessel, there was no choice but to just finish. James gets quite anxious during things like this because of all the past bad experiences (I'm sure this one's not going to help in the future). When he gets like that, his mouth tends to run....claiming that he hates this and he just wants to die. But, bless his heart, when it's all over, he still thanks everyone for coming and for all they done for him. He never ceases to amaze me!!!

This afternoon, the doctor called to give us the report. They believe that the tumor is bigger now. Six months ago, the tumor measured 3cm x 3cm x 3.5cm. It now measures 3.5cm x 3.5cm x 3.8cm. I believe our reprieve is over. Don't get me wrong. I am very thankful for that reprieve. We needed that...James needed that.

Now, the doctors will send his scans to Duke to get their opinion and I will send the scans to Dr. Burzynski in Houston to get his take.

Then we will enjoy Christmas!!!!!!

I think tonight about the words to one of my favorite songs:

"God's been good....in my life.
I feel blessed beyond my wildest dreams
when I go to sleep each night.
And though I've had my share of hard times,
I wouldn't change them if I could,
Cause through it all,
God's been good.
And though I've had my share of hard time.
By my side He's always stood.
Through it all.....
God's been good!!!!!"

We will make a decision in the New Year.

There really ARE zebras in Philadelphia

2009-10-02T08:53:00.000-07:00

This phrase, "There really are zebras in Philadelphia," is commonly used by doctors to mean that not everything fits into the normal box of results. Of course, if you are in Philadelphia and you hear hooves, you will normally think "horse." Horses are common in Philadelphia. But, you cannot exclude that occasionally it may be a zebra, although rare, still possible.

This is how James' treatment has been all his life. He RARELY fits into what is common and normal. For example, when one gets an infection, their white blood cell count will rise, an indication of fighting an infection. But, for James, his actually goes down, a result of damage to his bone marrow from chemo, thus causing it to not be able to keep up with the production of white cells.

Several months ago, I was sure that James had hypothyroidism. He has all the tell-tale signs. But, when I took him to the endocrinologist, his thyroid tests were normal, so they wouldn't treat him. As I watched James continue to be lethargic, gain weight quickly, and have red skin, I was sure that something needed done. So, I took him back to the endocrinologist and asked if she would just give the treatment a try, which she did. They waited 6 weeks and tested James again. In that time, his weight gain stopped, but he did not lose any weight and he is still lethargic and has red skin. I was sure that the doctor would see that, although we seem to have started to solve the problem, it isn't solved yet. But, again, his levels were fine and she did not want to change his dose.

I didn't know why James' levels were fine yet he clearly had signs of hypothyroidism, but I figured it had something to do with the fact that James rarely fits into the "normal" category.

But, yesterday I figured out the answer. It came from my sister's sister-in-law, thank you Christa! Are you ready?

When ones thyroid is not functioning right, the pituitary gland increases its production of TSH to stimulate the thyroid to work. The pituitary gland is located near the hypothalamus, which controls the pituitary gland. So, when the thyroid levels drop, the TSH levels rise. When this happens, it indicates hypothryoidism. James' TSH levels are not elevated, in fact they are somewhat low. So, the doctor did not want to treat hypothyroidism.

But, if you take into consideration that James' tumor is IN the hypothalamus and that James just had surgery last summer that would have damaged the hypothalamus as well as the pituitary gland, you would realize that the normal process is not going to happen for him.

So, James' thyroid levels are low (1.1 with the normal being between 4.5-12.5) and his TSH levels are also low. A clear indication that he DOES have hypothyroidism, but that his pituitary gland is damaged.

With this information, I am taking him back to the endocrinologist today to hopefully get his Synthroid increased. The other question that we will have to address is this damage to the pituitary gland. The pituitary gland doesn't just control the thryoid, but also controls other organs, including the adrenal gland. James' labs do indicate that his adrenal gland is also not working properly, so the ultimate answer for him may be that he will need treatment for the damaged pituitary gland. We will see what the endocrinologist says today.

But, a reminder (should there be anyone reading that cares), There really are zebras in Philadelphia, RARE, but they are there.

Is anyone noticing?

2009-09-30T09:41:00.000-07:00

Christine Reid, a OCU Law and Hatton Sumner alum is editor of the "Kingfisher Times and Free Press". She was astonished at the lack of attention given to childhood cancers and wrote a fabulous article on this subject earlier this month -- for which we are most grateful.

Here is an excerpt:

September is a disease awareness month, which you probably recognized by the gold ribbons displayed on all the corporate advertising on TV and in magazines and the special media reports.

What’s that? You haven’t seen any? That’s because, for some reason, this class of diseases attracts hardly any public attention.

If I said “pink ribbon,” you would have immediately thought of breast cancer. “Red ribbon” might be a little trickier, but eventually you would have come up with heart disease.

But the gold ribbon is nearly invisible. It represents childhood cancers.

Today, as you read this, the equivalent of a classroom full of children will be diagnosed with cancer in the U.S., more than 12,400 a year. About 4,000 child cancer victims will die this year, making cancer the number one disease-related killer of children under 14.

While 75 percent of childhood cancer cases are curable, for some forms, a cure remains illusive.

Only one new cancer drug has been approved for pediatric use over the past two decades. For some of the rarest, but most deadly, childhood cancers, no new treatments have been introduced in more than three decades.

For every one child diagnosed with pediatric AIDS, 15 children are diagnosed with cancer, yet available funding dollars designated for research are vastly disproportionate: $595,000 for each AIDS victim and only $20,000 for each pediatric cancer victim.

Federal funding for breast cancer research is more than double that for all 12 major groups of pediatric cancer combined.

Those statistics are staggering, particularly here in Kingfisher County where we can superimpose the faces of so many amazing children over those raw numbers: Zach, Morgan, Colby, Logan and Shaelyn are just a few that come to mind.

Those portraits in courage, whose resilience and tenacity – sometimes against all odds – have inspired us all, make it even more important that our gold ribbons are not invisible this September.

For the full article: http://tinyurl.com/n64s4u

Good doctors are PRICELESS

2009-08-04T14:05:00.000-07:00

One of the hardest things about leaving Chicago was leaving the doctors that have taken care of James since he was a tiny (and I mean TINY) 11 month old. Dr. Goldman will forever be in our hearts for all that he did for James. If I could have taken him with us, I would have. But, something tells me that the hospital and his patients in Chicago, not to mention his wife and children, would not like that idea.

But, God is good (another "God is good" moment) and gave us a wonderful doctor here. In fact, Dr. Mogul was VERY much like Dr. Goldman - fun, cheerful, good with the kids, AND HE LISTENED, something that is VERY important to me.

Medical books are good and very important, but when a doctor wants to take care of a patient based solely on medical knowledge, not taking into account the parents' input, they are not giving the best care. Not every patient or every situation fits into the "medical book" norm. And James......he hasn't fit into many "normals" at all. I'm digressing here, but I want to share a little lesson from a Mom of a brain tumor child who is also an ER doctor:

One of the common teaching points when one is going through medical school and hit the clinical years is that common things happen commonly. Because they have usually spent the last year learning about pathology and all kinds of weird diseases, their list of potential diagnoses are long (and sometimes humorous to practicing docs). These students are told, "If you live in Philadelphia and hear hoof beats, think horses, not zebras." It is a dictum that doctors learn too well. They have seen the snickers and the rolling of the eyes. They have heard their teachers tell patients, "You know that almost never happens", "If it happened to you, we would have to wrote it up in a medical journal", "You've been seen by alot of doctors and they haven't been able to find anything wrong with you" or even "There is nothing wrong with you." What is forgotten is that there are Zebras in Philadelphia. OK, they aren't common and they live in the zoo. But there are going to be times that the hoof beats are zebras. I strongly believe most doctors either forget or are not trained to look for zebras. They are not looking for the rare or something they never have seen.

So, I was very worried when I heard that Dr. Mogul was no longer at the Oncology Clinic and we would have to find yet another doctor. What's the chance that we could find one more doctor that will care for James like we are so used to. But, AGAIN, God is good and He gave us Dr. Bryant. She is not funny like Dr. Goldman and Dr. Mogul, BUT she is very, very kind and she really cares about James. And, most important, she listens. In fact, I spent an hour today on the phone (hint - she didn't make any money off this conversation) talking to her about concerns that I have about James' care. She is wonderful!!! THANK YOU, LORD!!

For now, there is no treatment recommended. But, she is going to send James' records to Duke, to one of the best pediatric oncologists in the nation (I'd tell you his name, but it's incredibly long and I have no clue how to spell it - suffice to say he is called Dr. G). Dr. G and his team will see James and look through all his records and make recommendations. If (big IF) anything needs done, it will most likely be carried out in Charlotte.

She, Dr. Bryant, will also get us established hopefully with a neurosurgeon in Columbia (because its closer than Duke) for emergencies. She so graciously listened to my concerns regarding the neurosurgeons in Charlotte (reference my post last year about the worse doctor ever). She was very understanding and willing to help us find a doctor that we feel comfortable with to give James the best care possible.

Again, I am reminded of how good God is!!!

Coming soon.....pictures at the dentist. James is doing a very good job - only 3 more visits to finish all the work that needs done.

Johannah update

2009-07-23T15:42:00.000-07:00

Johannah has done so well since our move to Charlotte. I was not impressed with the neurologist that we first saw here (although I have not been impressed with any neurologist yet), but since she was doing so well, I figured I only needed him to fill prescriptions. We certainly weren't going to change anything in her treatment with her doing so well.

But, today we went to see the neurologist again and ended up seeing Dr. Nelson (which is who we were originally supposed to see). I went with the same plan in mind, "No change...just order her meds."

But, this guy was different. He seemed to really know what he was talking about and what he was doing. He listened to how Johannah was doing. Although he also agreed that she was doing very well, he wanted her to be doing better. So, he has increased her Lamictal just a little bit.

He also told me that he's been following the Frisium issue (the medication that Johannah takes, but it is not approved yet in the U.S., so we pay for it out of pocket at about $350.00 a month). He said this medication should be approved very soon, allowing insurance to cover it. PRAISE THE LORD!!!

Once again, God is good and has filled a need that we had.....a doctor that cares about Johannah.

Here's the best part.....he thinks that she is pretty much back to the original symptoms that she had when first diagnosed, which was Benign Rolandic Epilepsy. This is an illness that is almost always outgrown. But, with all the grand mal seizures she had over the last 2 years, we (and the doctors) did not know what was going on and whether she would really outgrow this. With the opinion that Benign Rolandic Epilepsy is really all she has, there is hope that someday this will all come to an end for Johannah. AGAIN, PRAISE THE LORD!!!

A blog that inspired

2009-07-08T13:45:00.000-07:00

http://www.joelroyaltyfamily.blogspot.com

I knew Deena from our college days, but only recently came across their blog when I had heard about the extremely difficulty delivery of their 6th child and how wonderfully God spared both Deena and the baby. That brought me to their blog, but then I kept reading....and reading....and reading. I was so thoroughly blessed by the stories of this family - the lightheardedness, the transparency, and the truly Godly spirit that they show.

Then, it made me think about my blog, this blog, called, "God is so good." I wondered if I have really shown God's goodness on the blog. So, I determined to blog better - first by looking around and seeing how good God is everyday in our lives and then by sharing that goodness with anyone willing to read.

So, today I thought, "What can I see today of God's goodness," of course thinking about what I can share on the blog. I realized that I haven't updated much this summer or even this year because not much is "going on." James did very well in school this year, even likes reading more. Johannah is doing SO much better this year. No treatment, only normal trips to the doctor, etc, etc.

Then, something happened today that made it all come together. I took James to the dentist. Up until now, James has always had to be premedicated with an antibiotic before going to the dentist. But, today the dentist said it wasn't needed. I thought, "Oh no, you don't know what you're talking about. James has ALWAYS needed premedication. I will call the oncologist and get this straightened out." Which I did! But, the nurse called back from the oncologist's office and said, "Nope, he doesn't need the premedication. No central line, no treatment....no antbiotic." I think only a Mom that has a child with a chronic illness, that has needed chronic treatment, can understand what I'm feeling. But, when you have done something for so long - whether it be an antibiotic regularly or chemotherapy or whatever - and that stops, there is a fear of leaving the "comfort zone" of therapy.

Here is my "God is so good" moment....that life is SO normal this last year that there isn't much to write about and there isn't even a need for an antibiotic.

When we took James for surgery last summer, we knew it wouldn't be a cure. What we hoped for was at least a few years off treatment to give him a break. But, soon after moving here, an MRI showed that the tumor was coming back. I was discouraged, wondering, "Had we done the right thing?" But, here we are!!!! One year down with no treatment. God has so graciously held that tumor at bay, allowing James a year of "normal." For that, I can say GOD IS SO GOOD!! Although we know that these circumstances can change with the very next MRI, we can rest today in the knowledge that this last year was given to us by God.

UNC Tarheels

2009-05-03T13:03:00.001-07:00

What a wonderful time we had going to the UNC Tarheels baseball game. Here's a few pictures when James went to dinner with the team.

James and the guys

Chase and James

Johannah and I went to lunch with Aunt Laura while James was with the guys.

Chase and James

THIS really impressed me. Before the game, the entire team kneeled in the outfield and prayed. May God bless this team for their faithfulness to give Him the honor.

Thanks guys, and Coach Fox, for making the day so special for James. You have certainly made a difference. Hope to see you all again soon.

Checkers Hockey

2009-02-20T17:24:00.000-08:00

What a surprise it was to receive free tickets to the Checkers hockey game here in Charlotte. Thank you! We had never been to a hockey game before (let along watched hockey), so I wondered how much I'd enjoy it. But, when you have 2 teen boys, how can you pass up free tickets? And in a private suite!

I was suprisingly amazed at how much I enjoyed the game. I could really get into hockey!

Here's some pictures of our night. We had a great time!

Prayers Answered

2009-02-10T16:54:00.000-08:00

THANK YOU, everyone, for all your prayers. We could clearly tell today that many were praying for James.

When we first arrived at the MRI, we asked the nurse if they could use the Emla cream (numbs the skin) for injecting the contrast. But, she said they didn't have Emla cream there. I could see the panic on James' face. They came and got me when it was time to inject the contrast. I stood there reminding James of all the people that were praying for him and of the stories that everyone sent to help him get through. This brave little guy got through the whole thing without a single whimper. I WAS SO PROUD OF HIM.

The MRI shows that the tumor is the same. Of course, "gone" would have been nice to hear. But, as many of you know, I was afraid of growth because James has been showing signs of memory issues. Now we know that this must be a residual of his surgery this last summer. Praise the Lord there is no growth! And, PRAISE THE LORD for all the friends that He has given us that walk with James on this path.

Prayers

2009-02-09T20:08:00.001-08:00

Tomorrow James goes for his MRI. Pray that it will go smoothly, James hasn't quite gotten used to having to get stuck now that he doesn't have a central line anymore. Pray that we will have wisdom regarding the next step for James.

Here are some emails that were sent to James to help him tomorrow. They are so sweet, thought I'd share them with you. Thanks everyone!!!

To My Brave Buddy James,

Hey, what's this I hear about a birthday? Why didn't I get an invitation to the party? How about sending some pictures. Not the ones from the MRI, either. I lost the address for your blog page on the internet. Care to send them to me again? Tomorrow is the big day. You will be tough, won't you? I hear that some witch doctor is going to stick you with some needles. If anyone comes near you with a spear in their hand and wearing a funny looking Indian-like outfit with feathers-----run! Otherwise, do what needs to get done so you can get healthy again.

(aka pizza pal)

~~~~

Hi!

Just wanted to let you know that we have been and will continue to keep you in our prayers! We often wonder how you are doing, but we know that God is always there with you and He will take care of you!!

Just got done reading your blog. Happy Belated Birthday! Hope you enjoy that trampoline, just don't fall off!:o)

God bless you!

~~~~~

Hey Leiann, Please tell James we are praying for him here at Chicago. He is on our school's prayer list and my personal list. God will be with him, I know. The kids at school have really taken this prayer request to heart.
~~~~~

Hey, James! I hear that you are going to have to be stuck -- that's not going to be any fun, I'm sure. Have you figured out how to take your mind off of those things you don't like?

I've got a couple of ways. My favorite is to talk with Jesus. You know, pick out your favorite Bible story and start asking Jesus questioins about it. One of my favorites is when the children wanted to come to Jeus and the grownups tried to stop them. Jesus told everyone to let the children come to Him. That's a good story to talk over with Him.

Another is the story about a hundred sheep. Ninety-nine of them were safe at home, and Jesus went looking for the one missing. I love that one, knowing that Jesus cares about all His little lambs.

Once, when I was in the MRI machine, the throbbing really got to me and I had to make pictures in my mind. I remembered one that was taken from a high spot over a horse farm. You could see the barn, and three large paddocks, each with some horses in it, and there was another fence that went all the way around the paddock. I pretended to be walking along that outer fence, talking to all of the horses inside and offering them an apple. It helped me get past the noise while I waited through the test.

Best of all, James, there are lots of Baptist Moms who will be praying with you and your Mom. Jesus tells us: "For where two or three are gathered together in my name, there am I in the midst of them." (Matthew 18:20) So, we'll all be there with you and Jesus in the midst of us. Just close your eyes and think about us -- some are old, some are young, but we all join with Jesus in prayer for you.

God loves you, and so do we

HAPPY BIRTHDAY JAMES

2009-01-29T18:03:00.000-08:00

Wow, seems like I just posted my tribute to James for his 10th birthday. I can't believe its been another year. James is now 11. In 2 short years, he will be a teenager (ahhhhhh). Yet, I still can't help but look back. James was diagnosed at 11 months. When he was at his worst on this journey, he weighed only 11 pounds. And now he is 11 years old. I'm not big on numbers, but it still makes me think....and be thankful for every year that we have with James.

Thank you Lord!!!!!

We had a great time with friends and family for James' party.

There was quite a crowd - 27 in all!

The kids all had fun jumping on the trampoline that James got for his birthday. You can do that in North Carolina in January :)

Prayers needed

2009-01-26T21:24:00.000-08:00

An optic glioma, the type of tumor that James has, is considered a "benign" tumor. How deceiving that word can be. Too many believe that it means that this tumor will/can do no harm. Yet, I write tonight with tears flowing and a heavy heart because sweet Baby Briannah lost her life tonight to an optic glioma. www.easysite.com/babybriannah

The Olsens need our prayers during this difficult time. And, while you're at it, James will be having an MRI on February 4th. He has been showing signs of memory issues - which we hope are a residual of the surgery this last summer.

Pictures

2008-12-04T08:52:00.001-08:00

Anyone that knows me knows that I LOVE pictures. I realized that I haven't put any pics up lately, except the event with the UNC baseball team. So, here goes:

James in a bomber plane at the Aviation Museum

We have figured out how to talk to Jon on the webcam.

James' cousin, Amanda, loves purses. But, I'll bet this was the first time she got one wrapped in dollar bills. This is what Aunt Laura did for her birthday. Do we have a crazy family, or what?

Aunt Trisha decided to take the kids to pick pumpkins (L-R, Cousin Rachael, our dear friend Semaline from Lebanon, Aunt Trish (in the back), Johannah with her cousin Brittney (Trisha's daughter), James, and Josh). But, they couldn't find the farm. So.....

.....this was their pumpkin patch. Thank you, Walmart.

James picked the biggest one!!!

Unexpected MRI Results

2008-12-03T12:37:00.000-08:00

James had an MRI this last Monday. Now that he does not have a central line, getting the contrast can be quite traumatic - and this time was no exception. I'm not sure how many sticks it took, although I'm sure James can tell you exactly. But, we finally got it. Dr. Mogul, James' new oncologist, called today to say that the results show that the tumor is SMALLER than the August scan with pockets of necrosis (dead tumor) in the middle. This is actually the results we should see when he is on treatment. So, maybe all the supplements that he has taken this summer have truly helped. Dr. Mogul suggested that we don't start any treatment. He emphasized many times, "First do no harm." Although this is the oath that doctors take when becoming a doctor, I assure you they do not all practice it. So, it was quite a blessing to us to hear him say that. He feels that any treatment at this point may be more detrimental to James than beneficial. I have a feeling we are going to love Dr. Mogul as much as we have loved Dr. Goldman. We thank the Lord for giving us a doctor that is this understanding.

We will still await the opinion and suggestions of Dr. Buryznski in Houston. But, for now, this is good news!!!

Now, we are looking forward to a very blessed Christmas and we pray that you all have the same!!

Meeting with the Tarheels

2008-11-11T06:42:00.000-08:00

What a wonderful time we had at Oak Ridge Elementary School, who was holding a fundraiser for the Pediatric Brain Tumor Foundation.

James with the Team. They sent James a copy with all their signatures. Funny note...when James saw the pictures he said, "I didn't know their names were on their shirts."

James and his "brothers." We watched them lift him up that night, and we are confident that they will "lift him up" for years to come. Thanks guys!

James with the father of catcher, Chase Jones. They gave James an official team jersey that they had all signed. How cool is that!

Here is a link to the news story about the event:
http://www.myfoxwghp.com/myfox/pages/Sports/Detail?contentId=7831526&version=1&locale=EN-US&layoutCode=VSTY&pageId=6.1.1

"Big Brothers"

2008-09-16T14:14:00.000-07:00

James has three big brothers that absolutely adore him. But, now he will have almost 40 more, as the UNC Baseball Team adopts him. We are really looking forward to what is ahead.

Already, James has received emails from the bullpen catcher, Chase Jones. Chase also battled a brain tumor. http://chasejnews.blogspot.com So, he carries a special understanding of what James has and is going through.

Chase Jones

Chase and his parents

With brother, Jake

Coach Mike Fox has also been trying to get a hold of James, but we keep missing his calls. Sorry, Coach.

I look forward to them making a difference for James. I know James will make a difference in their lives, too.....he has certainly made a difference in mine.

The American's Creed

2008-09-16T13:58:00.000-07:00

I never thought I'd be so glad to hear the American's Creed. I'm proud to be an American, but it isn't for that reason. The other day, while starting James' history lessons, we came to the point that we were to start learning the American's Creed. Although James would have done this last year in Mrs. Hady's class, remember, he just went through major brain surgery this last summer where he lost almost all short-term memory. On top of that, James has always had trouble memorizing...an after effect of hydrocephalus (extra fluid in his brain that caused pressure) when he was first diagnosed.

So, in light of all of this, I wondered how hard it would be to get this memorized this year. The first day, I said, "James, let's read the American's Creed." He said, "I can say it to you." And proceeded to say, by memory, the entire thing - almost word perfect.

I was thankful to hear the American's Creed that day. Not because I am thankful to be an American (which I am), but because I am thankful that God has given me my James back.

"O taste and see that the LORD is good: blessed is the man that trusteth in him." Psalm 34:8

Friends of Jaclyn

2008-09-03T08:28:00.000-07:00

Soon after we moved to Charlotte, we were contacted by Dennis Murphy of "Friends of Jaclyn". www.friendsofjaclyn.org

"The Friends of Jaclyn Foundation is inspired by Jaclyn Murphy, an 11 year old, who was diagnosed with a medulloblastoma, a malignant brain tumor, in March 2004. Jaclyn's strength and courage, relentless spirit, and joy for life are an inspiration to those who know her."

Jaclyn's father, Denis, works very hard to connect pediatric brain tumor patients with college sports teams, who will adopt them and make a difference in their lives. "It is our hope that through Jaclyn's example, we can help to improve the lives of other children and families dealing with pediatric cancer."

We just found out that James will be adopted by the North Carolina Men's Baseball Team.

James is very excited. In Chicago, James enjoyed going to the White Sox games, for whom he became an avid fan because of Dr. Goldman. We look forward to going to some of the games there in Chapel Hill, especially since James' cousin, Raechel, attends UNC in Chapel Hill.

Thank you, Denis, for doing this for the kids. You are making a difference.

"And of some have compassion, making a difference:" Jude 1:22

Something normal

2008-08-20T20:06:00.001-07:00

James did something "normal" today....he went to the dentist. Things like that get pushed to the back burner when dealing with the tumor. But, he was well overdue for a visit. In fact, he has several teeth that need repaired. Pray that it goes well for him. We will spread it out over 2 or 3 visits.

Johannah is next week.

James is doing quite well

2008-08-17T20:23:00.001-07:00

Many have asked what the results of the MRI are. Well, that's a tricky questions because we were not looking for change, but an answer to what we already knew was there. The official MRI report simply says, "No change." So, our questions will not be answered until I am able to get the disk to Houston. Of course, my own questions won't be answered until I can look at it myself.

To be honest with you, I am "dragging my feet." James is doing so well. His memory is almost back to baseline, which is such an answer to prayer because I really expected it to take most of a year. His head is healing up quite nicely and his hair is even coming back. He is really, really doing well. So, I am in no hurry. Maybe I should be.....but I just have this overwhelming desire for James to simply enjoy the rest of the summer.

But, when I get that disk and when I get it to Houston and when we see what it shows....I will certainly let you know. Then, we will ask God which direction He wants us to go. For, if God is with us, it doesn't matter where the path takes us.

Isaiah 43:16 "Thus saith the LORD, which maketh a way in the sea, and a path in the mighty waters;"

MRI with spectroscopy

2008-08-12T09:31:00.000-07:00

The pediatrician that we have established with here in Charlotte has been so wonderful. They have bent over backwards to make sure this MRI with spectroscopy for James gets scheduled. In fact, it is tomorrow at 7:00 p.m.

I sit here and I ask myself, "What do I ask people to pray for?" To be honest, I don't know. I know that God is in control and I know that He has cared for James through every step of this brain tumor journey. But, I'd be lying if I didn't say that I'm scared. I don't know what this MRI will show. I don't know if it will let us continue on this road or force us to make a turn. James is doing well. His memory is getting better. His incision in his head is healing now. He feels well.

I think that my fear stems from the knowledge of what James has already been through. The mom in me doesn't want him to have to endure any more. I want the MRI to show that the tumor didn't really grow. I want it to say that what we saw last month was just swelling....that is now going down. I want James' days to be smooth going and care-free. But, I don't know if that will be the case.

So, maybe I should be asking people to pray for PEACE. A peace in knowing that WHATEVER the MRI shows, God is still in control, He is still good, and He will continue to walk with James (and our family) down whatever path this takes us.

"Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee." Isaiah 26:3

Our worst ER visit ever

2008-08-07T08:52:00.000-07:00

James was diagnosed in 1998 at Riley's Children's Hospital in Indianapolis, Indiana. He received most of his care over the last ten years at Children's Memorial Hospital in Chicago, Illinois. He has also been to Texas' Children's Hospital in Houston, St. John's Hospital in Springfield, Illinois, NYU in New York, Children's Hospital of Philadelphia, and now Levine Children's Hospital in Charlotte. Needless to say, we have been to a lot of ERs and met a lot of doctors, many with the typical, cocky, "God" syndrome.

BUT, this neurosurgeon that we met last night at Levine Children's Hospital is the worst doctor we have ever met, by far, bar none. Although James clearly had a pocket of infection in his scalp, sitting right above shunts, he did not want to do anything for him then because "it was 7:00 Wednesday night." "We'll have someone look at it tomorrow." The more I tried to emphasize my concerns that this was a potential risk for disaster, the more he emphasized that I was not the doctor and how dare I try to "manage his care." Hmmmm.....I think that's been my job for the last 10 years. Twice, he pointed his light at me and said, "You are wrong! You are NOT the doctor and I am not going to rush him to the OR just because you want me to." So.....how about rushing him to the OR because he NEEDS it. We were clearly dealing with an ego problem. By the end of our five minute conversation, and many blantant condescending remarks from him to me, I was shaking and in tears - scared more than anything of what was going to happen to James. My sister demanded a Patient Advocate to come and then Dr. Jekyl turned into Mr. Hyde.

Thankfully, the plastic surgeon showed up and agreed that the wound definitely needed debrided in the OR, but still deferred to the next day - I think out of respect for the neurosurgeon. I simply informed them that if they dragged their feet at caring for the problem and anything happened to James as a result, I WOULD hold them responsible. Consequently, they decided they would be willing to debride the wound under conscious sedation in the ER.

Interstingly, this neurosurgeon who at first insisted that there was NO risk and that there may not even be an infection (even though the wound was clearly draining pus), then decided to look at the scans, confirm the infection, and see that, although the shunts were not in the immediate vicinity of the infection, the shunt catheter was directly beneath it - maybe even the cause for the infection in the first place. That doesn't sound like no risk to me.

They sedated James, debrided the wound (boy, was I thankful he was sedated - that was one disgusting wound), and cauterized it with silver nitrate. Then they sent us home with more of the special dressing and the silver nitrate. I'm not sure if that is something that is usually done....I suspect they just wanted to get rid of us.

Now, we will pray that the wound will heal properly and that I can find an appropriate neurosurgeon for James, because I will NOT be going to the group that that doctor is from.

Back to the hospital

2008-08-06T11:19:00.000-07:00

We are heading back to the hospital and could use your prayers. When we were in the hospital last time, we noticed that the incision on James' head was getting a build-up of some crusty stuff. I asked the neurosurgeon about it. He said it was okay, don't worry about it, just keep it clean and let it fall off by itself. Well, we have kept it clean, even cleaning it with peroxide, and had him shower daily. But, it wasn't coming off. In fact, it was getting thicker. So, I had decided to put some baby oil on it to soften it and try to get it off. Well, today when I started working it up, it was completely infected underneath. Needless to say, I am not happy about the advice I was given - it should have been dealt with long ago. So, we are heading straight to the ER of Levine Children's Hospital to get it cared for. Please pray that it will not cause serious problems.

All's clear

2008-07-18T11:56:00.000-07:00

The doctor told us today that the cultures drawn on Tuesday just before we were discharged are officially negative. He drew another culture today, only because that's what the doctor from the hospital wanted. But, he doesn't feel that James has an infection. In fact, he checked his white count and it was normal. Incidentally, his hemoglobin was 11.3. That is REALLY good for James. Let's pray that James can simply enjoy the rest of the summer.

As far as the MRI results...I have decided to "hold on." I have started him on supplements that should help with edema, should that be what was really on the MRI. If we do another scan in about 3-4 weeks, and make it a PET scan or spectroscopy, we should be able to see what is tumor and what is something else and also see if anything has improved. Please continue to pray for James - I'm not sure how...but God does.

"We've been sprung!"

2008-07-15T20:01:00.000-07:00

Those were Aunt Laura's exact words as we drove out of the parking garage of the hospital. Dr. Cortlandt, the pediatric attending, and I came to a compromise (she really is a good doctor - I like her). She agreed to let us go home if we had a blood culture drawn before we left and then another blood culture drawn this Friday at the pediatrician. We agreed.

Poor James had already had two IV lines placed (which take several tries to get in) and multiple blood draws from his arm. So, it was getting to the point that each attempt was a kicking and screaming fit (with lots of claims that he would rather die than have it done). So, I promised him a new game if he did a good job for this last stick before being discharged. Bless his heart...he wanted that game so bad - and new that he wasn't going to want to be still for it - that HE asked Aunt Laura to hold his arm down "really hard" so that he wouldn't move. I WAS SO PROUD OF HIM - he really is the bravest little guy I know.

The "infectious disease" dilemma

2008-07-15T14:08:00.000-07:00

During James very first hospital stay in December of 1998 at only 11 months old, the infectious disease service kept us longer than I wanted to stay. And no hospital stay since then has been any different, including this one.

In the past, though, I have fought to have James discharged so that we could go home and we would treat him there - even if it meant using IV antibiotics at home.

But, the difference this time is that there is ABSOLUTELY NO indication that we have anything to treat. James cultures from his catheter were positive - so it was removed, taking the infection with it. The cultures taken from his arm before AND after the removal of the catheter have been negative. The culture of his spinal fluid was negative. His white count is normal. Yet, infectious disease insists that he has IV vancomycin (one of your strongest antibiotics) simply because James is at risk of infection of his shunts because of the hardware in his head. Well, guess what.....James is at risk of infection of the hardware in his head EVERY DAY OF HIS LIFE.

The problem is that James has not been able to keep an IV line longer than a few hours this entire hospital stay. The last one infiltrated this morning and put vancomycin under his skin, leaving blisters. To give him IV antibiotiocs, we would have to start yet another IV line (torture for James and probably nigh impossible to do) OR take him to the OR and place a PICC line for antibiotics for an infection that does not exist.

To me, the risk of having an overkill of antibiotics - thus putting him at risk of becoming antibiotic-resistant is greater than the risk that his shunts will become infected when there is no visible sign of infection left in him.

So, here we sit.....waiting and waiting.....hoping to get home soon. We'll keep you posted.

Our hospital tour continues

2008-07-13T18:27:00.000-07:00

James woke at 4:00 a.m. Saturday and began almost screaming in pain because his head hurt so bad. Then, he started throwing up. My sister, Laura, and I rushed him to the hospital (Levine Children's Hospital in Charlotte). I was convinced that we had another shunt malfunction and that he would be in the operating room within the hour. But, the CT scan looked fine. Throughout the day, he seemed to get better and by evening he was fine. Until that time, all labs and tests had come back normal, so we were baffled at what had made him so incredibly ill. But, this morning - just before we managed to get out the door for discharge - the culture from his central line came back positive. Since he has no known need for the line in the near future and since we have rarely had success at clearing a line infection - we have opted to just have the line removed. Hopefully, they will get him worked into the operating room schedule for Monday morning.

It has really been nice being at a hospital where we have family nearby to visit and let James know how much he is loved and prayed for. Pastor Edwards came right away on Saturday to see James (with Pastor Clark) and pray for him. Aunt Laura and Amanda, his cousin, came today to spend some time with him and encourage him. Amanda took a dry-erase marker and wrote pictures and messages all over the windows in James' room (there are many windows and they are big). Today, although James still did not remember everything - he did have a much brighter affect and laughed quite a bit.

Please continue to pray for James' future treatment. They did an MRI here and we are overnighting it to Dr. Burzynski. I might not be reading it right because there might be inflammation involved, but it looks like it's possible that the tumor has already grown. We'll see what the radiologist in Houston says. But, we are thinking that treatment is going to have to start soon.

I got a message from Barb - who worked with me at St. James in Chicago Heights and who has also been so helpful in doing the fundraiser for James, along with Kristin. She mentioned that they have finished the fundraiser and have sent the stuff here with the checks. First, I want to say "THANK YOU ALL WHO HELPED AND GAVE!!!!!!!" We REALLY appreciate all you have done. We will take the money and get James started on treatment right away. The information for the medical fund is on the left if anyone wants to help with James' treatment.

More than anything, we appreciate all your prayers.

Memory - Visiting Winter

2008-07-09T07:43:00.001-07:00

James is recovering very well, but the memory issue is very slow going. Yesterday, we went to visit Winter Gilland in the hospital. Winter has the same type of tumor as James. She was in the hospital to have her tonsils and adenoids taken out.

Today, James was able to recall many details of the visit. That is VERY encouraging.

We really appreciate all your prayers.

Follow up in New York

2008-06-25T01:38:00.001-07:00

We headed back to New York yesterday for James' follow up appointment with Dr. Wisoff, thanks to Loice who got us to our appointment safely despite the turn that I suggested that landed us in Queens.

We did not see Dr. Wisoff, but just the nurse who removed the stitches (at least what she could since some of them were placed later during the shunt revision - hopefully those dissolve). The stitches weren't so easy to remove and the nurse wasn't so gentle, so it didn't go really well. I told James I'd take him to McDonalds afterwards for being so brave. But, McDonalds was a few blocks away and it started to rain. Of course, our umbrella was in the suitcase that we had conveniently dropped at the Ronald McDonald House. So, lunch ended up at the nearest restaurant that we could find - called Cristina's.

James trying to make the same face as the guy on the totem pole

We stayed at the Ronald McDonald House. James thought he'd spend some time in the playroom, but the energy level didn't last long. He did meet "Angel" in the lobby and he really liked that - he LOVES dogs.

We even got to meet up again with the family that we ate with at the cookout a few weeks ago. www.caringbridge.org/visit/ber I wanted to post his website because I went to it and saw what this poor little guy has to go through and my heart broke. Please keep him in your prayers.

Today, we head home!!!!!

The Liberty Bell

2008-06-23T19:44:00.000-07:00

We went today with Bill, Loice, and Tori to the Liberty Bell and to ride the "Ducks." We had a WONDERFUL time. Here are some pictures of our day.

James and Tori with some "historical figures."

A lady teaches how they did weaving

Teaching how the wool was spun

James at the Liberty Bell

Independence Hall

James riding on the "Ducks"

Our guide for the tour was VERY funny. Loice and Tori were "quacking" up

Even James was a little "quacked"

These are upscale condos right at the Pier on the Delaware River

Thank you, Middletons, for taking the time to take us today!!!!!

Grace Independent Baptist Church

2008-06-22T13:48:00.000-07:00

Today, we had the privilege of attending Grace Independent Baptist Church with Pastor Vanhoose and his family. What a blessing that was! Mrs. Ferguson came to pick us up in the morning with Mackenzie.

After the morning service, they had a wonderful meal at the church. James took our camera and went around acting like the "roving reporter."

Pastor Vanhoose, whose birthday is today. HAPPY BIRTHDAY!!!!!!!!!!!

Mrs. Vanhoose and Levi

Caleb Vanhoose, their oldest son.

Isaac Vanhoose

Andrew Vanhoose

Caleb and Levi - isn't he adorable?

We had a wonderful time visiting with the Schultzes - Joshua, Caleb, and Debbie Kenderdine's grandparents - at the dinner.

Noah - a friend that James met

The boys were having fun

Stephanie, a college student that we knew from Fairhaven

Stephanie's Dad

Stephanie's Mom

Traci brought us back to the hotel in the afternoon and James has been sleeping ever since. I hope he didn't overdo it. Tomorrow, if he is feeling well, we will try to get to the Liberty Bell before we leave on Tuesday.

Discharged

2008-06-21T08:15:00.000-07:00

James was indeed discharged today - and we are glad. We are beginning to feel like we are on a cross-country hospital tour. James is feeling much better today. I could tell when he was starting to get irritated with a lot of things this morning. When he isn't feeling well, he really doesn't care. So, under these circumstances, crabby is good. His sodium is still only 130, but they felt it was safe to discharge him and just have him eat a high-sodium diet.

Loice helped us get back to the hotel, stop at the bank, and get some breakfast. She has been such a help. We are going to rest for today and hopefully get to church tomorrow.

We are at the same Extended Stay America Hotel in Horsham, PA and we are in room 218.

Up

2008-06-20T08:53:00.000-07:00

Sodium is up to 130 at noon today. Let's pray for a morning discharge.

Sodium

2008-06-20T05:49:00.000-07:00

James' sodium went from 120 to 127 yesterday, but then leveled off. It did not rise any higher overnight. I would guess that it needs to get around 135 before they will let us out. Thanks for all your prayers.

Much better today

2008-06-19T08:35:00.000-07:00

Now that the pressure is relieved in James' head, he is doing MUCH better today. He is really back to where we were when discharged from NYU. He still has memory issues and slowed answers, but yesterday we were doing good to get him to talk at all. I am so thankful that Loice was with me through it all. I think it was her help and navigating that made the whole thing go so smoothly.

I checked out of our hotel this morning in anticipation of a longer hospital stay. If they should discharge us soon, we will check back in. Mrs. Ferguson, James' teacher in the 1st grade who moved out here last year, came and gave me a ride back to the hospital with her daughter Makenzie. THANK YOU, TRACI!!!

When I got back to the hospital, James had eaten and his sodium is now reported at 125 - so we are heading in the right direction. Tentatively, if things continue this way, they anticipate possibly getting out tomorrow. That would be nice so that we could still have a bit of a visit in Philadelphia. James doesn't want to leave without seeing the Liberty Bell.

Shunt is revised

2008-06-18T20:35:00.000-07:00

James' shunt revision went well - took only 30 minutes. He is looking a little "shell shocked" right now, but is improving quickly. His sodium is still low, even after 5 sodium infusions so far. This is common for James - to have the sodium difficult to improve. My prayer is that it will correct by tomorrow and he will be able to be discharged. I'll let you know.

In the hospital again

2008-06-18T11:05:00.000-07:00

James had a wonderful day yesterday. We went to Dr. Loice Swisher's house for the afternoon and James played bowling on the Wii, played outside with Loice's daughter, Tori, on the swingset, and cooked out for dinner. I'd say he watched Charlotte's Web also, but I think he only saw that from the inside of his eyelids. We really had a great time.

BUT, he woke this morning at 4:00 a.m. throwing up. I wondered if he had just over done yesterday and had planned to lay low today. But, he continued to throw up. I called Dr. Swisher who took us to Children's Hospital of Philadelphia (CHOP). By the time we arrived at the ER, he had thrown up 5 times. A CT scan showed that one of his ventricles is enlarged - meaning that the shunt is not working correctly. We knew that this was a possibility with his original resection of the tumor because of debris that would be left behind and could possibly block the shunt. He is now (2 pm) in surgery to clear the shunt. Normally, a patient would go home the next day after a shunt revision, but James' sodium was also too low (121, normal is around 140). So, it is probable that he will stay in longer.

We appreciate your prayers for James

Phone

2008-06-17T11:00:00.000-07:00

I think I solved the phone problem. I apologize to those that tried to call and couldn't get through.

Philadelphia

2008-06-16T13:03:00.000-07:00

James was indeed discharged today and we are now at the Extended Stay America hotel in Horsham, PA.

Juleen was there to check us in when we arrived. When she heard that James was coming from surgery, she dropped everything and got James into our room and resting before we had even finished checking in. She has checked on us and been there to help with anything we needed. She has really been a blessing!!!!

It feels good to be out of the hospital. James is doing VERY well. He handled the drive better than I thought he would. We are looking forward to a week of rest and visiting with a few friends.

The # here is 215-784-9045 and we are in room #239. We will be here until next Tuesday, the 24th, when we will return to NY for a follow up appointment with Dr. Wisoff. Then, prayerfully, we will be able to stay at the Ronald McDonald House that night because we fly out of LaGuardia on the 25th.

Thank you all who have prayed. We can tell.

Rehab/Dr. McNeilly/Father's Day

2008-06-15T12:34:00.000-07:00

I can tell James is feeling a little better. Twice during the night, he managed to get out of bed by himself....WITHOUT PUTTING THE SIDERAILS DOWN, which are supposed to keep him in. He is getting around very well, but is still somewhat confused. So, getting up by himself is not such a good idea - it's hard to tell where we might find him.

The rehab nurse came to see him today. When she asked him where he was, he said a hospital in Illinois. When asked what he ate for lunch, he said that he had given it away (which is not true). BUT, when asked who called him today, he promptly said Dr. McNeilly - that was the right answer. I was surprised that he remembered, it had been several hours since the call. Thank you, Dr. McNeilly, for calling...you have made a difference.

He has asked me several times today when he will get out - so I think he's getting anxious. If all goes well, I believe it will be tomorrow.

James wishes he were home to tell Dad "Happy Father's Day." So, he thought he'd send a message with a picture.

A little clearer

2008-06-14T18:28:00.000-07:00

James was up today a little bit more and for slightly longer lengths of time. For the first time, he is starting to put things together. Its almost as if he is just now picking up where he left off before surgery. He wanted to know where the boys were and when his surgery would be. He was very surprised to learn that the surgery was already over. Although a bit clearer, he still wears out very easily. We do appreciate your prayers for his recovery and for wisdom regarding future treatment.

Veggie Tales did it

2008-06-13T15:27:00.000-07:00

James has slept the entire day. He did not open his eyes for Dr. Wisoff. He did not even open his eyes while he ate breakfast and lunch. So, when I went out, I stopped at Borders and looked for some things to engage him. One of them was a Veggie Tales movie. He is now wide awake....watching Moe and the Big Exit. You have to admit, if you saw vegetables singing - you'd be wide-eyed too.

A thanks to Martha for getting James started on Veggie Tales.

Slow progress

2008-06-13T07:53:00.000-07:00

James is still sleeping a lot, but seems a little less confused today. I talked to Dr. Wisoff yesterday and he explained that each week James will improve, but within that week we will have ups and downs. He warned us not to try to compare it day to day, but to use 3-4 day blocks to compare. James' answers today are still not always accurate, but they are not quite as "outrageous" as they were before. I knew that he was doing somewhat better when I asked him what his favorite drink was. He said, "MD." That's my boy!!!!! Unfortunately, when the endocrinologist came to see him the first day, she took one look at his Mountain Dew and said, "Get rid of the sugared soda." She worries that he will put on too much weight with the steroids. So, we have tried to do better. Dr. Wisoff says that, barring any unexpected complications, James will be discharged Monday. We thank you again for all your prayers. We do not take that lightly. Over the last ten years, we have watched James defy many odds and we know that it is nothing short of answered prayer.

TRULY, GOD IS GOOD!!

I met Mindy Blumenfeld on the Pediatric Brain Tumor forum. Her son has been treated for an ependymoma. She lives near New York and has been here to visit us twice now. Through a foundation that they started in their son's name, she has helped us financially. Today, she has offered to come sit with James for a few hours so I can take a break. Because of his confusion, he really cannot be left for too long. THANK YOU, MINDY! You have helped more than you can know.

I heard there's a McDonalds a few blocks away - I think I'll walk there when she comes.

WRONG NUMBER

2008-06-12T13:22:00.000-07:00

Before everyone calls and drives my roommate crazy, I gave the wrong number. The number is 212-263-1950.

Day 3 - Pink purse

2008-06-12T10:08:00.000-07:00

James is doing very well. So far, he has no endocrine issues that need corrected. All his vital signs are fine and all his labs are perfect. He is just very confused and has terrible memory (maybe he inherited that, though). Today, the neurosurgical resident came to check on him. He asked him to remember three things - cat, apple, and pencil. About five minutes later when he asked James to repeat them, James named three totally different and unrelated things. But, the most interesting one was the last one - pink purse.

Any that knows James knows that James would have nothing to do with pink or a purse. He is also not remembering what all the lines and wires are for - not even the IV tubing. So, he is constantly trying to take everything off. This makes him high maintenance right now - like trying to care for an octopus. Some of the problem could be coming from the steroids that he is on, but most of it is because of the swelling in the brain. I am told that it could take anywhere from a few weeks to a few months for it all to clear. So, that would be our biggest prayer request - that the swelling will clear and James will have no permanent damage.

They have moved him to a regular room. Our number is 212-263-1950, but I can also use the cell phone in this room. Dr. Allen said he did not see any reason that we shouldn't be discharge by Monday, he really doesn't have any major issues right now, just memory. But, he is not the one to discharge, Dr. Wisoff will.

Thank you again for all that have prayed and supported us.

Day 2 - 70%

2008-06-11T16:42:00.000-07:00

James is awake a bit more today, but quite confused....some of it kind of funny. When the nurse came today to take out his Foley catheter, he asked her what he owed her. She said nothing, but he insisted that surely he owed her something. She said, "No, today Foley removal is free." When I left for a few minutes, I came back and James handed me his IV tubing - which he had unscrewed from his catheter. I asked him why he did that and he said, "You told me to....right before you left, I asked if I could take it off and you said to just be careful." Of course, that conversation never happened. If you know James, you know that he is very used to IV tubing and usually knows not to take it off. Just an example of his confusion.

Otherwise, he is following commands and eating well. In fact, I think he ate more for supper than he usually does...probably from the steroids. They did another MRI today which showed that 70% of the tumor was removed. Dr. Wisoff is very happy with how the surgery went and how James is doing now.

Thank you for all your prayers...they really mean a lot. I huge thanks to the wonderful ladies that I work with at St. James for all their help and support and donations - and Barb for keeping Cocoa (who Josh is missing very much). Pray for his continued recovery and for the next steps for him in treatment.

Surgery

2008-06-11T04:17:00.000-07:00

Everyone finally got here Monday night - Dave, the boys, and Aunt Laura

We celebrated Johannah's birthday early and then Aunt Laura and I took her to the top of the Empire State Building.

James had to be at the hospital yesterday at 6:30 a.m. Surgery started at around 11:00 a.m. after an MRI that mapped out the brain (the reason for the little circles on his head). The surgery went very well. The surgeons thinks he got about 60-80% out, but won't know for sure until an MRI done today. James woke some just after surgery, but pretty much slept the rest of the night. The next 72 hours are the most important in terms of determining what damage has been done to the hypothalamus and what complications he may have because of it.

We really appreciated all those that called, wrote, or sent a card. If I did not return your call yet, I apologize. It was a hectic day. I will call.

Another headache

2008-06-08T15:10:00.000-07:00

We went to church this moring at Heritage Baptist Church here in New York. The people were very, very kind and even sang Happy Birthday to Johannah, who will be 13 on Wednesday. But halfway through church James came to me from his class and said his head hurt so bad and he was seeing double. So, we left and caught a cab back to the Ronald McDonald House. After some Tylenol and a nap, he is feeling better now. I'm not sure where these headaches are coming from. This is the third in the last week. Maybe it is tumor related, maybe it is an underlying infection that we don't know about (although his blood work this last week should show it), maybe its the heat (it was 95 today), or maybe he is having anxiety about the upcoming surgery. We'll pray that if there is a problem it will be found or if it is anxiety that the Lord will comfort him and give him a peace. We do appreciate your prayers also.

Our family will be traveling here today and tomorrow. Please pray for their safety.

Free Days

2008-06-07T11:11:00.001-07:00

We had no appointments on Friday, so we decided to attempt the subway and go to the Statue of Liberty.

Because of the incredibly long wait, we put the Statue off until Saturday and walked part of the Brooklyn Bridge on the way back to the RMH.

Johannah had a rough night with a grand mal seizure Friday afternoon and again Saturday morning at 4:30. Nonetheless, she decided she still wanted to head to the Statue of Liberty today, so we did. She was glad. By the time we got to Liberty Island, she was feeling a bit better and really enjoyed herself - though tired.

First, we took the ferry over to Liberty Island...but during the wait, we met a few "entertainers." The one with the clown hair sang a song about James.

We toured Liberty Island with some headphones that gave all the history of the island and the statue. It was VERY interesting.

Then, we toured Ellis Island, the historic immigrant island where all immigrants were brought years ago before they were allowed into America. There were some amazing stories there.

We headed back to the RMH afterwards as quickly as possible. The temperature at that time was 85 degrees and is supposed to get to 94. I think we'll stay inside the rest of the day.

Our family will begin travelling here tomorrow and Monday. Please pray for their safety and, of course, for James' surgery on Tuesday.

Testing/Dr. Burstin/WTC

2008-06-05T12:17:00.000-07:00

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

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

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

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

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

We also toured Trinity Church.

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

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

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

Bear and James

Dr. Kohn/Dr. Allen

2008-06-04T13:31:00.000-07:00

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

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

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

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

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

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

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

Thanks again for all your prayers.

A VERY long day

2008-06-03T16:35:00.001-07:00

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

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

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

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

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

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

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

Thank you so much for your prayers.

Prayers for our Fundraiser

2008-06-01T21:50:00.000-07:00

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

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

It's coming together

2008-05-29T15:07:00.000-07:00

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

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

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

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

Please continue to pray for the surgery.

Jon's Graduation

2008-05-17T09:20:00.001-07:00

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

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

Graduating class of 2008

Jon with Mom and Dad

Jon with James and Johannah

Jon with Joe and Josh

Jon with Grandpa and Grandma

Aunt Lisa and the kids

Jon and Aunt Lisa

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

Appointment with Dr. Wisoff

2008-05-17T08:45:00.001-07:00

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

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

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

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

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

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

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

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

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

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

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

Thank you so much for all your prayers.

Answered prayer

2008-05-07T17:13:00.000-07:00

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

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

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

Thanks for all your prayers. They mean A LOT.

Consultation with Dr. Wisoff

2008-05-03T15:07:00.000-07:00

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

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

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

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

~~~~~~~~

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

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

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

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

March 2008 MRI

2008-03-27T11:30:00.000-07:00

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

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

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

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

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

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

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

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

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

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

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

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

Praises!!

2008-03-09T15:08:00.001-07:00

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

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

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

THANKS FOR ALL YOUR PRAYERS!!

Prayers Needed!!

2008-02-26T18:15:00.001-08:00

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

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

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

Thank you so much for your prayers.

You should see the other guy

2008-02-24T19:37:00.000-08:00

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

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

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

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

Happy Birthday, James

2008-01-29T07:51:00.000-08:00

The other day I was heading to the bathroom and I passed, in the hallway, the place where I had just finally cleared the mountain of laundry that had blocked it for over a week. There sat yet another blanket and pair of wet pajamas...and it made me think:

~Because we have James, there seems to always be another pile of laundry to be done.
~Because we have James, homework time takes on a whole new meaning.
~Because we have James, I get calls from the school often to tell me that his pump isn't working.
~Because we have James, Johannah has someone to complain about in the bedroom.
~Because we have James, we all - at times - have a "special" aroma.
~Because we have James, we spend holidays in the hospital and endless nights at other people's houses.
~Because we have James, we know more about the anatomy of the brain than most.
~And because we have James, we have bills coming out the "wazoo."

BUT....then I thought.....

~Because we have James, Jon has someone to go candy selling with (that's significant if you know my Jon).
~Because we have James, we got to meet Dr. Mary, Kate Onkka, Peggy, Loice, the Smiths, and the many others that have become our friends.
~Because we have James, we have learned to be patient with those that aren't the same as us.
~Because we have James, we spend holidays giving gifts to those who spend holidays in the hospital.
~Because we have James, we have the opportunity to help others that are heading down "our road."
~Because we have James, we have seen God work in ways that we never could have otherwise.
~And because we have James, best of all, Mom still gets lots of hugs and kisses.

So, when I see that blanket in the hallway, answer that call from the teacher, stay up until midnight so he can rewrite his spelling for the fourth time, smell that "aroma," or put a few more bills on the piles in the office - I say,

"Thank you, Lord.....that we still have James."

Happy 10th Birthday, Buddy

Measurements

2008-01-25T13:28:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Getting help with their medications

2008-01-25T07:49:00.000-08:00

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

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

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

Not good...but not bad

2008-01-15T12:45:00.000-08:00

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

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

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

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

We do so appreciate all your prayers.

One more day

2008-01-10T10:28:00.000-08:00

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

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

Thanks for your prayers.

Quick Update

2008-01-05T19:23:00.000-08:00

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

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

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

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

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

What is Christmas about?

2007-12-16T20:13:00.001-08:00

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

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

MERRY CHRISTMAS!!!