Good doctors are PRICELESS

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

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

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

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

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

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

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

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

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

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.