Pictures

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

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

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"

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

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

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

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

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

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

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

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

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!"

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

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

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

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

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

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

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.