12 years ago

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

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?

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

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.