Colorado

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

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

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???

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!!!!

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

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

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

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

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!!!