Slow but steady

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

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!!!

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

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!!

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!

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

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

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

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

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!!!!

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!!!

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

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!!!